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Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Leslie,  hope your excellent recovery continues and soon you will be able to walk more and enjoy springtime.

Take care,

Florence2022

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hey@LeslieA glad to hear your surgery went well.  Sorry your hospital experience was chaotic it was crowded while I was there but pretty quiet.  There were a bunch of fourth year student nurses on the ward when I was there so I had a lot of attention.  I'm afraid I don't have any info on Zejula but if you put it in the search bar I'm sure you will find some in.  Take care and don't overdo things!

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Thanks Joan. One week since the surgery and I haven't done much outside the house, so I am resting well. I was trying to be a tough girl and avoid taking tramadol, but after enduring moderate discomfort for days, I decided to try one pill last night and it made a difference. (Apparently one of the nurses labelled me the "little martyr" because I guess I didn't make much of a fuss regarding my pain in the hospital). Maybe I am a bit, or maybe I was, but no longer. 

Hey@LeslieA glad to hear your surgery went well.  Sorry your hospital experience was chaotic it was crowded while I was there but pretty quiet.  There were a bunch of fourth year student nurses on the ward when I was there so I had a lot of attention.  I'm afraid I don't have any info on Zejula but if you put it in the search bar I'm sure you will find some in.  Take care and don't overdo things!

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Leslie, thank you for sharing your experience with pain killers. I was the same as you trying to use my own resources for pain. After my surgery the hydromorphone caused extreme nausea so I opted for Tylenol 2x 200 mg. every 6 hours even though the pain was only slightly masked. Throughout my 3 year journey this has been my mantra to use mindfulness meditation, exercise, rest etc to control pain, nausea and migraine headaches, but found that during chemo cycles and recovery taking the recommended meds moderately was very helpful.

OC is just a painful journey not only physically and emotionally but the uncertainty for the future, I feel that even when I am off treatment there are so many tests and days of feeling week or emotionally low. My girlfriends just sent me a text inviting me to a dinner but that will be on my 5th day of radiation so I have no way to know how I will feel so had to decline. This makes me feel isolated even with my wonderful husband, family and friends it is a feeling that I didn't understand before having a chronic disease.

I was always naturally optimistic and a bit curious so try to seek to create beauty everyday in our lives.. flowers, gardening going for tea at a new place, finding the perfect new spring shirt, reading uplifting books, meditating, exercising. Also holding the longterm vision ( as you said end game) close to our hearts to draw on when we feel low. My vision is of skiing in a deep powder on a sunny day making big graceful turns down the mountain..happy, healthy and fit.

Yesterday I had a contrast MRI and tomorrow a colonoscopy all to determine the protocol for radiation to try to reduced the tumours and extend the time before chemo is necessary. Woke up feeling low and very hungry, so here I am talking to my Teal sisters, the sun, there are tulips, magnolias and cherry blossoms everywhere  so it is a pretty good day.

Wishing you all the best.

Lauren

Thanks Joan. One week since the surgery and I haven't done much outside the house, so I am resting well. I was trying to be a tough girl and avoid taking tramadol, but after enduring moderate discomfort for days, I decided to try one pill last night and it made a difference. (Apparently one of the nurses labelled me the "little martyr" because I guess I didn't make much of a fuss regarding my pain in the hospital). Maybe I am a bit, or maybe I was, but no longer. 

Hey@LeslieA glad to hear your surgery went well.  Sorry your hospital experience was chaotic it was crowded while I was there but pretty quiet.  There were a bunch of fourth year student nurses on the ward when I was there so I had a lot of attention.  I'm afraid I don't have any info on Zejula but if you put it in the search bar I'm sure you will find some in.  Take care and don't overdo things!

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Lauren,

I love your ideas about seeking beauty in the ordinary or in every day living. It is always there if we look for it and this was a good reminder for me. This reminds me of my art school training from many years ago, which is learning to view our surroundings with fresh eyes. For example it could entail looking at the ground and appreciating the textures & colours of the leaves or shadows cast by the trees. I can remember feeling enthralled by my surroundings simply by becoming more aware of what I was seeing. And it is easy to forget about "seeing" things anew when in a health crisis.

 
These days I have been looking at the night sky, especially when it is cold & clear, gazing in awe at the magnificence of the constellations. It somehow gives me comfort that beauty is always present despite my sorrow. 
I sincerely hope that you can realize your dream of skiing down the mountainside in deep powder on a sunny day. And I hope that the tests yield helpful results. 

Take care,

Leslie 

Hi Leslie, thank you for sharing your experience with pain killers. I was the same as you trying to use my own resources for pain. After my surgery the hydromorphone caused extreme nausea so I opted for Tylenol 2x 200 mg. every 6 hours even though the pain was only slightly masked. Throughout my 3 year journey this has been my mantra to use mindfulness meditation, exercise, rest etc to control pain, nausea and migraine headaches, but found that during chemo cycles and recovery taking the recommended meds moderately was very helpful.

OC is just a painful journey not only physically and emotionally but the uncertainty for the future, I feel that even when I am off treatment there are so many tests and days of feeling week or emotionally low. My girlfriends just sent me a text inviting me to a dinner but that will be on my 5th day of radiation so I have no way to know how I will feel so had to decline. This makes me feel isolated even with my wonderful husband, family and friends it is a feeling that I didn't understand before having a chronic disease.

I was always naturally optimistic and a bit curious so try to seek to create beauty everyday in our lives.. flowers, gardening going for tea at a new place, finding the perfect new spring shirt, reading uplifting books, meditating, exercising. Also holding the longterm vision ( as you said end game) close to our hearts to draw on when we feel low. My vision is of skiing in a deep powder on a sunny day making big graceful turns down the mountain..happy, healthy and fit.

Yesterday I had a contrast MRI and tomorrow a colonoscopy all to determine the protocol for radiation to try to reduced the tumours and extend the time before chemo is necessary. Woke up feeling low and very hungry, so here I am talking to my Teal sisters, the sun, there are tulips, magnolias and cherry blossoms everywhere  so it is a pretty good day.

Wishing you all the best.

Lauren

Thanks Joan. One week since the surgery and I haven't done much outside the house, so I am resting well. I was trying to be a tough girl and avoid taking tramadol, but after enduring moderate discomfort for days, I decided to try one pill last night and it made a difference. (Apparently one of the nurses labelled me the "little martyr" because I guess I didn't make much of a fuss regarding my pain in the hospital). Maybe I am a bit, or maybe I was, but no longer. 

Hey@LeslieA glad to hear your surgery went well.  Sorry your hospital experience was chaotic it was crowded while I was there but pretty quiet.  There were a bunch of fourth year student nurses on the ward when I was there so I had a lot of attention.  I'm afraid I don't have any info on Zejula but if you put it in the search bar I'm sure you will find some in.  Take care and don't overdo things!

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Good morning Leslie,

I have been passively following your posts for the past while and would like to share a few things.  First of all, please keep a positive outlook every day. It can be difficult but is a contributor to your recovery.  Secondly, thank you for sharing your journey.

I went in for a 'full' hysterectomy on April 8th at Victoria Hospital, London Health Sciences.  I'm sorry to hear your hospital experience was poor.  Other than a couple of hiccups I had a very positive experience and was discharged after one night post surgery. Regardless of how well things go during treatment I always take time to provide feedback and acknowledgment to my medical teams after discharge. I find it is one thing that I can do for them.  I keep a journal and note as many names as possible for my feedback, as I realize there are dozens who are involved in my treatment and I'm always amazed by the teamwork and collaboration.

I was diagnosed with HGSC mid-2021.  Although I had a small tumour on one ovary, no surgery was prescribed at the time.  After 6 cycles of carbo and paclitaxel, my oncologist put me on a Parp-inhibitor, Zejula (aka Nairaparib).  (I think this is the one that you mentioned.) I understand the Parp-i is aimed at helping cancer cells repair damaged DNA.  Sadly I had severe sleep deprivation & very frequent nose bleeds on Zejula and was taken off after 10 months.  

Late last year my oncologist noticed that the ovarian tumour was growing and had reached a 9.5 cm diameter.  Initially he was considering another series of chemo treatments.  As my CA125 was low (13), and with my request for a second opinion, he reviewed my case with the 'tumour board'.  Collectively they recommended surgery with full pathology on the tissues removed.  My followup is in 4 weeks when the pathology will be available. (Fingers crossed, no signs of cancer.)

Never hesitate to advocate for yourself.  I hope you have a strong support network who can help you zoom out and see the big picture now and then, as well as to help with the daily questions and concerns that arise.

Best wishes for an easy recovery.  And if you're in southwestern Ontario, enjoy the sun today.

- Wendy

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hello, Leslie

I'm so pleased that your surgery went (mostly) well and that you are back at home.

Everyone is different, of course, but for what it's worth, I'll describe my brief experience with Zejula (niraparib).  I was on it for a while last summer, starting on an intermediate dose.  My platelets plummeted quickly, so I went off for a bit and then back on at half the dose.  My platelets still plummeted, my blood pressure rose, and my kidney function declined.  (I have a kidney disease, too, so I have to watch my kidney function closely.) The medication was bringing me closer to needing dialysis, so I made the difficult decision to go off of it.

Again, I hope that your experience is different than mine, but I think that the lesson from my experience is to watch closely for side effects.  Even without niraparib, I was able to mark my 2-year anniversary of diagnosis still NED (no evidence of disease). 

Take care! 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Thanks for sharing your response to the Zejula. I think that my blood pressure is on the high side to begin with, and I noted that one has to regularly be aware of their blood pressure on this drug. With you hitting your 2-year anniversary of NED without this maintenance drug, it brings up other wonderings for me such as are these maintenance drugs absolutely necessary for survival, or do they bring their own side effects that could affect our quality of life? I mention this because I was in an ovarian support group through Wellspring and all the women were in the maintenance phase. Many complained of negative side effects from the drugs, and there were many different kinds being used. It certainly gave me pause. 

Hello, Leslie

I'm so pleased that your surgery went (mostly) well and that you are back at home.

Everyone is different, of course, but for what it's worth, I'll describe my brief experience with Zejula (niraparib).  I was on it for a while last summer, starting on an intermediate dose.  My platelets plummeted quickly, so I went off for a bit and then back on at half the dose.  My platelets still plummeted, my blood pressure rose, and my kidney function declined.  (I have a kidney disease, too, so I have to watch my kidney function closely.) The medication was bringing me closer to needing dialysis, so I made the difficult decision to go off of it.

Again, I hope that your experience is different than mine, but I think that the lesson from my experience is to watch closely for side effects.  Even without niraparib, I was able to mark my 2-year anniversary of diagnosis still NED (no evidence of disease). 

Take care! 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

@LeslieA How are you doing on your maintenance drug?  Are you having many side effects?  What is your quality of life like right now? Is there something going o n that is giving you pause in continuing on the maintenance drug? Or was it the discussion on Wellspring that has brought the wondering on? Are you still thiniking of pausing it?  When is your next Oncology appt that you may be able to discuss this before deciding on anything?  Like anything there are side effects and it all depends on you and how much you feel it is affecting your quality of life.  These are hard discussions and individual ones. That I urge you to discuss with your team.  You will find the answer you are looking for and it will be the right one for your journey when  you do. Wishing you the best in whatever decision you make. Give us an update sometime. In the meantime, take care of you!

Thanks for sharing your response to the Zejula. I think that my blood pressure is on the high side to begin with, and I noted that one has to regularly be aware of their blood pressure on this drug. With you hitting your 2-year anniversary of NED without this maintenance drug, it brings up other wonderings for me such as are these maintenance drugs absolutely necessary for survival, or do they bring their own side effects that could affect our quality of life? I mention this because I was in an ovarian support group through Wellspring and all the women were in the maintenance phase. Many complained of negative side effects from the drugs, and there were many different kinds being used. It certainly gave me pause. 

Hello, Leslie

I'm so pleased that your surgery went (mostly) well and that you are back at home.

Everyone is different, of course, but for what it's worth, I'll describe my brief experience with Zejula (niraparib).  I was on it for a while last summer, starting on an intermediate dose.  My platelets plummeted quickly, so I went off for a bit and then back on at half the dose.  My platelets still plummeted, my blood pressure rose, and my kidney function declined.  (I have a kidney disease, too, so I have to watch my kidney function closely.) The medication was bringing me closer to needing dialysis, so I made the difficult decision to go off of it.

Again, I hope that your experience is different than mine, but I think that the lesson from my experience is to watch closely for side effects.  Even without niraparib, I was able to mark my 2-year anniversary of diagnosis still NED (no evidence of disease). 

Take care! 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

@LeslieA How are you doing on your maintenance drug?  Are you having many side effects?  What is your quality of life like right now? Is there something going o n that is giving you pause in continuing on the maintenance drug? Or was it the discussion on Wellspring that has brought the wondering on? Are you still thiniking of pausing it?  When is your next Oncology appt that you may be able to discuss this before deciding on anything?  Like anything there are side effects and it all depends on you and how much you feel it is affecting your quality of life.  These are hard discussions and individual ones. That I urge you to discuss with your team.  You will find the answer you are looking for and it will be the right one for your journey when  you do. Wishing you the best in whatever decision you make. Give us an update sometime. In the meantime, take care of you!

Thanks for sharing your response to the Zejula. I think that my blood pressure is on the high side to begin with, and I noted that one has to regularly be aware of their blood pressure on this drug. With you hitting your 2-year anniversary of NED without this maintenance drug, it brings up other wonderings for me such as are these maintenance drugs absolutely necessary for survival, or do they bring their own side effects that could affect our quality of life? I mention this because I was in an ovarian support group through Wellspring and all the women were in the maintenance phase. Many complained of negative side effects from the drugs, and there were many different kinds being used. It certainly gave me pause. 

Hello, Leslie

I'm so pleased that your surgery went (mostly) well and that you are back at home.

Everyone is different, of course, but for what it's worth, I'll describe my brief experience with Zejula (niraparib).  I was on it for a while last summer, starting on an intermediate dose.  My platelets plummeted quickly, so I went off for a bit and then back on at half the dose.  My platelets still plummeted, my blood pressure rose, and my kidney function declined.  (I have a kidney disease, too, so I have to watch my kidney function closely.) The medication was bringing me closer to needing dialysis, so I made the difficult decision to go off of it.

Again, I hope that your experience is different than mine, but I think that the lesson from my experience is to watch closely for side effects.  Even without niraparib, I was able to mark my 2-year anniversary of diagnosis still NED (no evidence of disease). 

Take care! 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Graciebelle,

   Thanks for sharing your experience with Zejula so far. I am glad that it has gone mostly well for you. As you say, we are all individuals and our responses are unique. I guess I will just have to find out what will be my response. And, the alternative to this is not great!

   There is still a sense of everything being surreal for me; the cancer diagnosis, the chemo treatments, the surgery and in the near future, the maintenance stage. (I have involuntarily joined a club that I did not ask to be part of, like all of us. But, here I am, and here we are, all trying to live our lives as best we can). 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi @LeslieA and @graciebelle....first LeslieA I'm thrilled to hear your surgery went so well. That is very hopeful and no doubt the follow-up chemo is a precaution to ensure that any nasties that may still be lingering are managed. As for pain meds, I hear you. I did not want to take any as I had such a huge fear of constipation (I have dealt with hemorrhoids for years and couldn't imagine dealing with those AND post surgery recovery). Plus I feel there are so many people that experience bowel blockages that I was doing anything I could to avoid that. I did however take them sparingly but I did take them. I was told not to be a martyr and take the drugs. It was good advise. Your body needs them to heal as they provide the time for it to 'relax'. Anytime I took them, I also used Senokot-S that same night (sometimes 1.5 tablets) which really helped counter any constipation. I hope you continue to heal but remember to be kind to yourself. Take it slow. Do some small walks each day and increase as you can. If you get tired, rest. Your body is telling you so! 

@graciebelle it's nice to meet you. Thank you for sharing your story and experiences with Zejula. While I don't take that, rather I'm 6 months into Lynparza, I have had a lot of lower abdominal pain since I started taking it. It is a known side effect however I haven't found anyone else in this forum who has the same issue. So, it is true that the side effects can be so different from person to person. It's best to know ourselves more than anything. Your comment on a FB gorup specific to Zejula is great. I never thought of looking for that for Lynparza. Thanks for the tip. I truly do hope your fatigue starts to dissipate. 

@LeslieA you may not have any side effects from Zejula, you may have some that are common etc. As you so, the alternative is not great so I hope it will go well for you. Thinking of you as you recovery and sending positive thoughts your way.

Graciebelle,

   Thanks for sharing your experience with Zejula so far. I am glad that it has gone mostly well for you. As you say, we are all individuals and our responses are unique. I guess I will just have to find out what will be my response. And, the alternative to this is not great!

   There is still a sense of everything being surreal for me; the cancer diagnosis, the chemo treatments, the surgery and in the near future, the maintenance stage. (I have involuntarily joined a club that I did not ask to be part of, like all of us. But, here I am, and here we are, all trying to live our lives as best we can). 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

I am so appreciative of this opportunity for us to communicate with each other. It helps me tremendously to receive some support & encouragement or even some relatable truths about this complex experience! I hope that I can provide the same to you all as I settle into this new reality. I still feel "in the thick of things" as all this is so new. 

Hi @LeslieA and @graciebelle....first LeslieA I'm thrilled to hear your surgery went so well. That is very hopeful and no doubt the follow-up chemo is a precaution to ensure that any nasties that may still be lingering are managed. As for pain meds, I hear you. I did not want to take any as I had such a huge fear of constipation (I have dealt with hemorrhoids for years and couldn't imagine dealing with those AND post surgery recovery). Plus I feel there are so many people that experience bowel blockages that I was doing anything I could to avoid that. I did however take them sparingly but I did take them. I was told not to be a martyr and take the drugs. It was good advise. Your body needs them to heal as they provide the time for it to 'relax'. Anytime I took them, I also used Senokot-S that same night (sometimes 1.5 tablets) which really helped counter any constipation. I hope you continue to heal but remember to be kind to yourself. Take it slow. Do some small walks each day and increase as you can. If you get tired, rest. Your body is telling you so! 

@graciebelle it's nice to meet you. Thank you for sharing your story and experiences with Zejula. While I don't take that, rather I'm 6 months into Lynparza, I have had a lot of lower abdominal pain since I started taking it. It is a known side effect however I haven't found anyone else in this forum who has the same issue. So, it is true that the side effects can be so different from person to person. It's best to know ourselves more than anything. Your comment on a FB gorup specific to Zejula is great. I never thought of looking for that for Lynparza. Thanks for the tip. I truly do hope your fatigue starts to dissipate. 

@LeslieA you may not have any side effects from Zejula, you may have some that are common etc. As you so, the alternative is not great so I hope it will go well for you. Thinking of you as you recovery and sending positive thoughts your way.

Graciebelle,

   Thanks for sharing your experience with Zejula so far. I am glad that it has gone mostly well for you. As you say, we are all individuals and our responses are unique. I guess I will just have to find out what will be my response. And, the alternative to this is not great!

   There is still a sense of everything being surreal for me; the cancer diagnosis, the chemo treatments, the surgery and in the near future, the maintenance stage. (I have involuntarily joined a club that I did not ask to be part of, like all of us. But, here I am, and here we are, all trying to live our lives as best we can). 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Graciebelle,

   Thanks for sharing your experience with Zejula so far. I am glad that it has gone mostly well for you. As you say, we are all individuals and our responses are unique. I guess I will just have to find out what will be my response. And, the alternative to this is not great!

   There is still a sense of everything being surreal for me; the cancer diagnosis, the chemo treatments, the surgery and in the near future, the maintenance stage. (I have involuntarily joined a club that I did not ask to be part of, like all of us. But, here I am, and here we are, all trying to live our lives as best we can). 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Graciebelle,

   Thanks for sharing your experience with Zejula so far. I am glad that it has gone mostly well for you. As you say, we are all individuals and our responses are unique. I guess I will just have to find out what will be my response. And, the alternative to this is not great!

   There is still a sense of everything being surreal for me; the cancer diagnosis, the chemo treatments, the surgery and in the near future, the maintenance stage. (I have involuntarily joined a club that I did not ask to be part of, like all of us. But, here I am, and here we are, all trying to live our lives as best we can). 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi @graciebelle

I just had my check after 5 cycles of Zejula. I was worried about some symptoms of fatigue and lack of appetite (unheard of for me). But my oncologist said flu like symptoms are fairly common. And all of my blood results are normal now. I have been exercising more so maybe that kick started my system to make more red blood cells.

When you restarted Zejula after 2 weeks off was it at the same dose? I had to drop down after a week off in the first cycle and there is no protocol where they can bring you back up to the starting dose.

I'm approaching the 1 year mark next month and I'm not sure how I feel about it. Its like yay, I made it this far, but also I'm closer to the inevitable recurrence. Does that make sense? 

Stay well,

Claire

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Claire, every person's journey is different so yes it makes sense. Perhaps you will be the one not to have a reoccurrence. 🙏🩵 My OC returned after six months even after a successful surgery and good response to Carboplatin and Paclitaxel. I have metastatic HGSC which has been treated and controlled for the most part until recently. My original diagnoses was July 2022 so going into my third year. 
There is always hope and new treatments becoming available so try to live the best you can but still allow yourself to embrace those feelings. My personal mantra.. fear is my initial reaction but courage is my choice. 

Love and light,

Lauren xx

Hi @graciebelle

I just had my check after 5 cycles of Zejula. I was worried about some symptoms of fatigue and lack of appetite (unheard of for me). But my oncologist said flu like symptoms are fairly common. And all of my blood results are normal now. I have been exercising more so maybe that kick started my system to make more red blood cells.

When you restarted Zejula after 2 weeks off was it at the same dose? I had to drop down after a week off in the first cycle and there is no protocol where they can bring you back up to the starting dose.

I'm approaching the 1 year mark next month and I'm not sure how I feel about it. Its like yay, I made it this far, but also I'm closer to the inevitable recurrence. Does that make sense? 

Stay well,

Claire

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Claire, every person's journey is different so yes it makes sense. Perhaps you will be the one not to have a reoccurrence. 🙏🩵 My OC returned after six months even after a successful surgery and good response to Carboplatin and Paclitaxel. I have metastatic HGSC which has been treated and controlled for the most part until recently. My original diagnoses was July 2022 so going into my third year. 
There is always hope and new treatments becoming available so try to live the best you can but still allow yourself to embrace those feelings. My personal mantra.. fear is my initial reaction but courage is my choice. 

Love and light,

Lauren xx

Hi @graciebelle

I just had my check after 5 cycles of Zejula. I was worried about some symptoms of fatigue and lack of appetite (unheard of for me). But my oncologist said flu like symptoms are fairly common. And all of my blood results are normal now. I have been exercising more so maybe that kick started my system to make more red blood cells.

When you restarted Zejula after 2 weeks off was it at the same dose? I had to drop down after a week off in the first cycle and there is no protocol where they can bring you back up to the starting dose.

I'm approaching the 1 year mark next month and I'm not sure how I feel about it. Its like yay, I made it this far, but also I'm closer to the inevitable recurrence. Does that make sense? 

Stay well,

Claire

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

HI Lauren,

I'm so sorry to hear you progressed so soon after treatment. That is such a bitter pill after a good response. Was it detected by scan or CA 125?

Sending hugs

Claire

Hi Claire, every person's journey is different so yes it makes sense. Perhaps you will be the one not to have a reoccurrence. 🙏🩵 My OC returned after six months even after a successful surgery and good response to Carboplatin and Paclitaxel. I have metastatic HGSC which has been treated and controlled for the most part until recently. My original diagnoses was July 2022 so going into my third year. 
There is always hope and new treatments becoming available so try to live the best you can but still allow yourself to embrace those feelings. My personal mantra.. fear is my initial reaction but courage is my choice. 

Love and light,

Lauren xx

Hi @graciebelle

I just had my check after 5 cycles of Zejula. I was worried about some symptoms of fatigue and lack of appetite (unheard of for me). But my oncologist said flu like symptoms are fairly common. And all of my blood results are normal now. I have been exercising more so maybe that kick started my system to make more red blood cells.

When you restarted Zejula after 2 weeks off was it at the same dose? I had to drop down after a week off in the first cycle and there is no protocol where they can bring you back up to the starting dose.

I'm approaching the 1 year mark next month and I'm not sure how I feel about it. Its like yay, I made it this far, but also I'm closer to the inevitable recurrence. Does that make sense? 

Stay well,

Claire

Hi From Vancouver,

I had surgery in June (stage 3A) , chemo August to December, and started Zejula in January after a number of tests on the tumour pointed to this as the best option for maintenance (I have a small amount of tutor left in my lymph notes near by aorta that the they could not get during surgery.  I was so grateful to have very few side effects chemo  (of course the hair is gone ha).  C125 remains low and initial CT scans showed reduction in turmour left.  I am on a high dose 300 mg, in part due to my weight.  My BP spiked after a couple of weeks (high but I would not have noticed it without BP checks daily) and went off for 2 weeks to get my BP under control, back on and mostly doing well on it.  The last couple of weeks I am pretty fatigued when walking most stairs or hills.  Hemoglobin is apparently dropping.  More bloodwork and monitoring and may adjust dosage....we will see. To be honest. I have mostly felt fine on Zejula until this bout of fatigue when I do some exertion---the ol' everyone is different ha!.....I joined a FB group specifically for folks on Zejula and related drugs and I have found it very helpful and interesting.  A lot of good research and experiences shared. I just made it 1 year post Dx this weekend.  While a little anxious about what the side effects mean and will bring I am working to keep active and positive....beats the alternative.  Best of luck as your navigate the next steps of treatment.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Greetings, Teal Sisters!

It's so interesting--and often inspiring--to read about others' experiences. 

I thought I'd share something I did today.  I never planned on getting a tattoo, but sometime after my diagnosis, I had a mental picture of a little tiny crocus that I wanted on my abdomen.  With my incision, jp scar, and even a visible dot from my bioopsy, I wanted something pretty to look at on my belly.  So, today I got a tattoo.  Here it is!

Mentions of beauty, looking at the night sky, etc. make me think of the research on awe, a topic I teach on in an honours seminar.  (I just finished reading Dr. Dacher Keltner's book on awe, which I recommend.  He, like me, is a social psychology professor.) Finding on in everyday life is so good for our mental health.

I'm also a big fan of self-compassion--a topic I teach and do research on.  I'm happy to write about self-compassion, if anyone is interested.

In a potential answer to a question above about recurrence, I'll share something that my gyne-onccologist once said when I asked her about recurrence. She mentioned the "dandelion analogy." The idea is that, just like when you pluck a dandelion from the ground, you're not necessarily getting the whole thing, when you do surgery and chemo, you're not necessarily getting all of the cancer.  I'll also share something I posted recently that she once told me.  It takes one rogue cell to make cancer but a billion cells to be visible in a scan.  Wow!

I think I'm skeptical of anyone who goes by "Dr. (first name)." Exercise apparently can be an effective way to reduce the odds of recurrence, but I'd be wary of anyone who promises a silver bullet.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi @LeslieA. I agree that all these terms can be overwhelming. At some point they will just become part of your regular vernacular (as sad as that may seem). 

I will admit that I think about recurrence. Likely more than I should. My diagnosis was Feb '24 along with my debulking et al surgery. My 6 rounds of chemo ended in July '24. I started Lynparza (Olaparib) in Aug '24 and I'm 8 months into that. Every strange ache/pain however makes me wonder about recurrence. Even though I have according to my oncologist, responded exceptionally well to every phase of my journey so far. I am not sure there is an absolute answer to your question regarding why the recurrence happens. There appear to be so many factors at work when I consider the stories I've read from those that have had recurrences. No one journey has been the same.

As for "health regimes", my daughter-in-law to be is a PhD student in Molecular Science and her area of study is Ovarian Cancer (how serendipitous is that!). She speaks/presents at many OV Cancer conferences and interacts with many OVC patients and survivors. The one items she hears repeatedly from them is the importance of exercise - both in terms of using weights and also cardio. They are both important for our continued health. Post surgery you have to build back up to any type of exercise however ultimately integrating them into your daily routine is important. This can take the form of walking for 15 - 20 min and using 2lb weights. It doesn't have to be excessive. As for "Dr. Amy", it sounds a little skeptical to me. I think you can find a lot of information on this forum and the OVCanada website, for free, on nutrition, targeted exercise, mindset, and lifestyle. Plus you can get similar support from programs such as Wellspring and Look Good, Feel Better. 

As an aside, I hope you are healing and feeling stronger each and every day. 

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi @LeslieA. I agree that all these terms can be overwhelming. At some point they will just become part of your regular vernacular (as sad as that may seem). 

I will admit that I think about recurrence. Likely more than I should. My diagnosis was Feb '24 along with my debulking et al surgery. My 6 rounds of chemo ended in July '24. I started Lynparza (Olaparib) in Aug '24 and I'm 8 months into that. Every strange ache/pain however makes me wonder about recurrence. Even though I have according to my oncologist, responded exceptionally well to every phase of my journey so far. I am not sure there is an absolute answer to your question regarding why the recurrence happens. There appear to be so many factors at work when I consider the stories I've read from those that have had recurrences. No one journey has been the same.

As for "health regimes", my daughter-in-law to be is a PhD student in Molecular Science and her area of study is Ovarian Cancer (how serendipitous is that!). She speaks/presents at many OV Cancer conferences and interacts with many OVC patients and survivors. The one items she hears repeatedly from them is the importance of exercise - both in terms of using weights and also cardio. They are both important for our continued health. Post surgery you have to build back up to any type of exercise however ultimately integrating them into your daily routine is important. This can take the form of walking for 15 - 20 min and using 2lb weights. It doesn't have to be excessive. As for "Dr. Amy", it sounds a little skeptical to me. I think you can find a lot of information on this forum and the OVCanada website, for free, on nutrition, targeted exercise, mindset, and lifestyle. Plus you can get similar support from programs such as Wellspring and Look Good, Feel Better. 

As an aside, I hope you are healing and feeling stronger each and every day. 

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

LOL 

"good Christian man" is probably the least reassuring endorsement of a healthcare practitioner I've ever heard.

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Haha, I completely agree. It was the weirdest comment.

 The areas that I am using for support these days is a RMT massage once a month, light exercise online with Inspirehealth, a weekly online group seminar (life philosophy re: cancer) through Wellspring, & counselling therapy once a month. I would like to add art therapy or something like that. Once I am healed up from the hysterectomy, I will go back to the gym & perhaps start back with yoga. And walking of course. 

What is everyone else doing to stay well, be supported, pass the time? 

LOL 

"good Christian man" is probably the least reassuring endorsement of a healthcare practitioner I've ever heard.

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

@LeslieA when I was first healing, walking was my go to. I've now taken up swimming being in Florida. I'm up to 64 laps.  I plan to transition back to my Peloton bike in a few weeks and get back to light weights. Once it's warmer I'll get back on the road for some biking. 

Haha, I completely agree. It was the weirdest comment.

 The areas that I am using for support these days is a RMT massage once a month, light exercise online with Inspirehealth, a weekly online group seminar (life philosophy re: cancer) through Wellspring, & counselling therapy once a month. I would like to add art therapy or something like that. Once I am healed up from the hysterectomy, I will go back to the gym & perhaps start back with yoga. And walking of course. 

What is everyone else doing to stay well, be supported, pass the time? 

LOL 

"good Christian man" is probably the least reassuring endorsement of a healthcare practitioner I've ever heard.

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

You must be part fish, Alwayslearning! Impressive amount of laps! I would like to get back on my bike again when I am able. We have lots of nice wooded trails for bike riding. We just have to mind the bears. 

@LeslieA when I was first healing, walking was my go to. I've now taken up swimming being in Florida. I'm up to 64 laps.  I plan to transition back to my Peloton bike in a few weeks and get back to light weights. Once it's warmer I'll get back on the road for some biking. 

Haha, I completely agree. It was the weirdest comment.

 The areas that I am using for support these days is a RMT massage once a month, light exercise online with Inspirehealth, a weekly online group seminar (life philosophy re: cancer) through Wellspring, & counselling therapy once a month. I would like to add art therapy or something like that. Once I am healed up from the hysterectomy, I will go back to the gym & perhaps start back with yoga. And walking of course. 

What is everyone else doing to stay well, be supported, pass the time? 

LOL 

"good Christian man" is probably the least reassuring endorsement of a healthcare practitioner I've ever heard.

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

I find the comment about the Naturopath being "expensive but a good Christian man" totally inappropriate and irrelevant!!! Their professional credentials, customer satisfaction and proven results are far more important. Then of course being compassionate is helpful as well. 

In my early days I was referred the a Naturopath with an interest in cancer  told to be aware that he is very condescending and blaming about cancer. He was immediately removed from my list. 😀

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Oh geez I have been so busy I haven't had a chance to catch up with all of you.  WTF "a good Christian man" raises a giant red flag with me!  I was waiting for my bloodwork at the lab yesterday and the man sitting next to me said he was very blessed because he had his first broken bone at age 55 and then went on to say it has required eight surgeries so far.  I'm not sure if I would consider that a blessing.

I find the comment about the Naturopath being "expensive but a good Christian man" totally inappropriate and irrelevant!!! Their professional credentials, customer satisfaction and proven results are far more important. Then of course being compassionate is helpful as well. 

In my early days I was referred the a Naturopath with an interest in cancer  told to be aware that he is very condescending and blaming about cancer. He was immediately removed from my list. 😀

Excellent points Claire. It is good to talk openly about these so-called "helpers" who misrepresent themselves as MD's and offer their services at a high cost. I note that Dr. Berg is selling all kinds of supplements and makes a lot of money on his YouTube channel. No doubt that Dr. Amy is cashing in as well. I like the idea of creating a new category for social media "gurus." 

To Lauren's point about having a naturopathic oncologist, I think that is a great idea and I would like to find one who is trained in this area and can help offset side effects and bolster good health.  It was my impression that GP's and ND's didn't often work together in the cancer field, but this may have changed over the years. 

I went to my naturopathic doctor when I was first diagnosed and I could tell this wasn't her area. She recommended an ND who specialized in nutritive IV's, saying he was "expensive but a good Christian man." I found that to be a strange way of endorsing him and it made me feel skeptical about his service, so I didn't pursue it. Like Dr. Amy and others, it seemed that he was charging a lot because of the desperation factor. But, this may be unfair of me because I didn't research his service. As far as I know, he is the only one in our area who works with cancer patients.

Out of interest, I am going to look around on Vancouver Island to see if there is someone trained in oncology/naturopathic medicine similar to the person Lauren sees. 

Thanks for opening up this area for our discussion!  

Warmest wishes,
Leslie 

Hi Teal Sisters,

This is a fascinating conversation. I think it is always wise to be a bit skeptical when someone is giving advice outside of their field. I wasn't familiar with Dr Amy until reading these posts. She is legitimately a Dr of pharmacy (ie. a PhD, no small achievement) but she is not a medical Dr. Nor does she have a degree in nutrition. I think she is intelligent enough to put together some well reasoned, sound advice. And she has had personal experience with Ovarian cancer which no doubt makes her very driven to find answers.  But the red flag for me is that she is aware that the majority of people will assume she is an MD and therefore someone you should feel safe getting advice from. The same is true of Dr Berg, who I did follow while doing a keto diet. He is a chiropractor and they do not receive training in nutrition or virology or public health. (PS he is also a Scientologist so there's that). The second red flag is that she is selling something she knows - again from her personal experience - you and I are anxious to know. What can each of us do to survive this disease? If you have money to spare go ahead and do whatever you think helps.  But desperate people will go into debt seeking help and can be taken advantage of.

As to which form of OC she had and its survival rate, I would expect anyone in our situation to represent their disease honestly, especially when offering advice and even more so when being paid for it. There are rare forms of immature teratoma- mixed germ cell cancers which are aggressive and have a lower survival rate. Possibly she is not in the 93% survival rate group. 

Maybe we need a new category debunking or verifying social media gurus offering cancer advice.

 Stay well everyone

Claire

Thank you Melissa. As the saying goes, if it seems too good to believe, it probably is. I know there are many so-called "helpers/healers" who take advantage of cancer survivors who are seeking helpful solutions. It is despicable and hugely disappointing. Dr. Amy presents herself as a Canadian "cancer doctor" but that is probably not true as well. I notice her fees are in US $$ for her services and very expensive. 

Dr. Berg is another example of a "doctor" with a huge YouTube following. He is actually a chiropractor who gives tons of medical advice. YouTube tried to shut him down for a while, but I notice he is going strong again. 

I guess the clues are simplistic explanations that are offered: "eat this is you want to prevent a cancer recurrence; don't eat these food items or it will likely come back." 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Melissa, thank you for sharing your valuable insight. It is natural for us to seek alternative care but you are right to be cautious. Cancer just makes us vulnerable to these "practitioners" who offering all kinds of solutions. Even well wishing people offering advice for something they have not experienced or have limited knowledge.

I have found my Naturopathic Oncologist ( FABNO trained) to be very helpful with side effects and to maintain general health. 
They know that they don't have the tools to fight OC alone but offer support with diet, vitamins, nutritive IV's etc. as an example I was having migraines for 5 days after chemo and the meds were hurting my stomach, she recommended the IV with magnesium and B- vitamins which was very helpful. They are also trained in contraindications so there isn't any conflict.
I also have a wonderful acupuncturist that helps me tremendously.

The Mindfulness course offered by BCCA is also wonderful and I continue to practice which has brought me peace through my health journey. 

As part of the cancer journey we are also very fortunate to have Well Spring and Inspired Health with so many helpful services.

This is just my journey and there are so many helpful ideas on this site. Despite all these things this miserable cancer is so invasive I am just trying to live well with OC.

Hoping to do some gardening today and maybe a little bike ride.

Have a beautiful Easter!

With gratitude,

Lauren xxx

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Good evening, Teal Sisters!

The professor in me is very happy to see all the healthy skepticism out there. 

LeslieA mentioned an interest in awe and self-compassion, so if you share her interest, read on... Awe is what we experience when we encounter something vast (literally or metaphorically) that exceeds our experience/capacity to understand.  Nature is an obvious source of awe, but so are art, music, complex ideas, and moral beauty.  I will always remember the experience of walking out of the Metro in Washington, DC on January 21, 2017 and joining the sea of pink that was the Women's March.  That was a day of awe for me.

Self-compassion is what is sounds like: compassion turned inward, although to many (if not most) of us in the West, that may seem like a strange concept.  It is rooted in Buddhist philosophy and consists of three interrelated facets.  1) Self-kindness involves treating yourself the way that you would treat a good friend, or someone else you care about who is having a tough time.  We are often are own worst self-critics.  If you catch yourself criticizing yourself, ask if you would say the same to a friend.

2) Common humanity involves the understanding that all humans are imperfect, and we all suffer.  Often when we are struggling, we say things like, "Why do these things always happen to me?" We may fail to notice that others are suffering, too.  I think this relates nicely to our community of Teal Sisters.  Being part of this community reminds us that we are not alone, and we all share this (unwanted) bond.

3) Mindfulness involves holding negative thoughts and feelings in a state of balanced awareness, rather than going to one extreme of suppression (which may backfire) or the other of ruminating. This is a more narrow form of mindfulness than you may have learned about.  Here is the "light bulb" moment that I often share with students.  I have had many travel troubles over the years, so I don't remember which one this was, but I was at an airport once when someone announced that my flight was delayed because of "crew." (What kind of "explanation" is that?!) I was mad, but I didn't start ranting and raving at the powerless gate agents, nor did I tell myself that everything was fine, and that I loved the idea of spending yet another night at an airport hotel.  Instead, I thought to myself, "This is frustrating." I allowed myself to feel frustrated but didn't get carried away.

I think that mindfulness may be especially important for this community.  It reminds me of how someone posted that she lets herself have "all the feels." It's unreasonable to expect anyone to be happy or even to put on a brave face all the time.  Emotional suppression can be mentally taxing.  It's okay to be sad, angry, frustrated, etc., especially when you are living with or beyond a terrible disease.

I try to practice self-compassion in my own life, but I sometimes fail, and I try to be self-compassionate about that, too. :)

If you'd like to learn more, check out Dr. Kristin Neff's web site: https://self-compassion.org/. 

Hi Melissa, thank you for sharing your valuable insight. It is natural for us to seek alternative care but you are right to be cautious. Cancer just makes us vulnerable to these "practitioners" who offering all kinds of solutions. Even well wishing people offering advice for something they have not experienced or have limited knowledge.

I have found my Naturopathic Oncologist ( FABNO trained) to be very helpful with side effects and to maintain general health. 
They know that they don't have the tools to fight OC alone but offer support with diet, vitamins, nutritive IV's etc. as an example I was having migraines for 5 days after chemo and the meds were hurting my stomach, she recommended the IV with magnesium and B- vitamins which was very helpful. They are also trained in contraindications so there isn't any conflict.
I also have a wonderful acupuncturist that helps me tremendously.

The Mindfulness course offered by BCCA is also wonderful and I continue to practice which has brought me peace through my health journey. 

As part of the cancer journey we are also very fortunate to have Well Spring and Inspired Health with so many helpful services.

This is just my journey and there are so many helpful ideas on this site. Despite all these things this miserable cancer is so invasive I am just trying to live well with OC.

Hoping to do some gardening today and maybe a little bike ride.

Have a beautiful Easter!

With gratitude,

Lauren xxx

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Ladies,

Just a little quick video

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi Ladies,

Just a little quick video

Hi Leslie,

I was reading this thread and the part about " Dr Amy" caught my attention. When I was first diagnosed I found her videos on YouTube as well and at first I felt like I found something helpful.

I can't place my finger in it but something just didn't sit well with me so I looked her up. She was diagnosed with stage 3 ovarian CA but....... Germ cell mixed with teratoma. Translation, very very very high survival rate. She  was not diagnosed with epithelial ovarian CA but, she has made many videos where she includes herself in our category. Even going so far as implying she was part of the 40% survival rate.

She completely misrepresented herself to gain subscribers and money and I find that despicable.

ISeriously contemplated calling her out but I decided against it as she Seems to actually be a pharmacist and is helping women with breast cancer.

Thank you, every bit of information helps. These terms and medications are all so new to me that I have to look everything up. The oncologist mentioned BRCA 2 to me after an initial blood test, and I have since taken another at her request plus we will see what the tumour tissue sample reveals, taken out of me last week. I find this to be a confusing new language to learn re: abbreviations such as BRCA, HRD, parp, etc., but I will get there! 

I am wondering a lot about something else: when there is a cancer recurrence (which seems like it often happens), does that mean the maintenance drug wasn't the right choice, or it wasn't used after surgery or something else such as cancer cells regrouping and changing course? Is it likely that we will all go through with recurrences no matter what we do? (I know a young woman who opted out of maintenance drugs, instead adopting a rigorous health regimen and her cancer came back within a year with a vengeance). Perhaps important to note is that she had stage 4 OC. She went back to aggressive chemo and now accepts that she needs maintenance drug therapy going forward. 

There is a woman named Dr. Amy who markets a cancer-free program through YouTube, saying that she had stage 3 OC 8 years ago and has had no recurrence. She coaches women on nutrition, targeted exercise, mindset, and lifestyle to remain "cancer free". Her program is expensive and I just wonder if it is all bunk? 

Hi @LeslieA,

Its wonderful that your surgery went well and that the prior chemo was so effective! I am currently taking Zejula following my surgery and chemo. I started at 200mg based on my weight. It caused some insomnia for a few days. Other than that, I didn't seem to have any side effects. However, by day 21of the 28 day cycle my neutrophils dropped to 0.4 (normal is 2.0-7.0). I was taken off the medication for a week and then resumed it at half the dose 100mg. I feel quite well on the drug. That said, there can be serious side effects, so have a thorough discission with your oncologist.

I tested negative for any germline mutations, but the tumor tissue tested after surgery showed a deletion of the whole BRCA 1 and 2 gene. Before starting Zejula another sample was sent to test for HRD status which was positive. I don't know if HRD status is a requirement because I'm pretty sure I started the medication before the results were known. 

Hope that helps.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Hi @LeslieA.  So happy to hear that you are home and recovering well from surgery and didn't have to spend too long in the hospital chaos!  I will be starting on Zedjula this coming week so will keep you posted on how that goes.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie 

Thanks BennieTBear! Yes I feel stronger every day. Please let us know how you are doing with the Zejula treatment. 

Hi @LeslieA.  So happy to hear that you are home and recovering well from surgery and didn't have to spend too long in the hospital chaos!  I will be starting on Zedjula this coming week so will keep you posted on how that goes.

Hello Teal Sisters,

   I am happily home from my full hysterectomy and all the other "ectomies" including debulking. I was in the hospital for 3 nights and was very motivated to get out as soon as possible. Victoria General Hospital was overrun with patients in the hallway, overworked nurses, and a feeling of chaos. I was well-looked after for the most part, but found the noisiness, terrible food, and grungy bathroom quite enough for 3 days. I vomited profusely the next morning after surgery, which was unpleasant, but felt better after the purge. I drank tons of water. 

   I made sure I ticked all the boxes for going home as soon as possible and made the 3.5 hours drive home on Thursday, hugging my pillow. 

   In terms of surgery, it was completed in approximately 2.5 hours. The surgeon said that the tumour in question was very tiny and there were no other spots of cancer to cut away. He said my response to chemo was remarkable. They used an epidural to keep the area numb and I only remember pushing the pain button twice the first day after surgery, thereafter using Tylenol and Cellebrex. Now at home, I keep to the regimen of Tylenol every 6 hours and accept the normal amounts of discomfort. I am also on blood thinners twice a day. 

   The sun is shining today and I wish I could walk more, but I have been warned to slow down. So for now it is up and down the hallway and perhaps next week it will be more steps. 

   My understanding is that remnants of the tumour will be sent away for further study and the drug Jezula be a consideration for maintenance (once I complete the follow-up chemo). I have no idea about this medication. Have others been on it and what was your impression? 

   I hope that everyone is hanging in there and doing as well as they possibly can. I really appreciate the support and information you provided me before surgery; I used all your suggestions and it helped! 

   I will try to catch up on the conversations that have occurred while I was out of commission. 

Leslie