Hi everyone my name is Eileen. I am so glad i found this site. I live in Kelowna BC. Have 4 grown p children. Have a little furry shih tzu and cat to keep me sane. My late husband died, be 3 and half yrs ago due to lung cancer that spread to his liver before finding out. I was diagnosed with stage 3c ovarian cancer on Valentine's day, of all days to get the bad news Feb 14 2021. The cancer had spread to my perirectum and omentum.Been feeling not quite well for awhile. Been having bloating etc. back and groin pain. My dr thought it was groin pain from pulled muscle. Long story their but I am with a new dr now. Woke to feeling abdomanal pressure and noticed it hurt below just pressing. Hospital kept me few days to run tests to make sure it didnt spread elsewhere. But funny thing is, I was in hospital for groin pain in Dec 2020 and they did ct then and the radioologist said i had a 13mm cyst on my ovary back then. I asked the dr when I found out in Feb 2021 that I had a 13mm cyst back then. Their answer was oh we didn't know what we were looking for. You can imagine what went through my mind then. But I started chemo in March 2021, was scheduled for debulking surgery in beginning of July 2021 but with this covid and all precaution I was taking, I came down with it and my surgery had to be delayed. Needless say I got my debulking surgery, full hysterectomy and removal of my omentum. Then had 3 sessions of chemo afterwards. I had a few delays in my chemo due to my blood levels, they had to lower my carboplatin on my 7th chemo by 10 percent but still ca125 levels went own by my 8th chemo which was Nov 2021 I had another delay when they did my ca125 levels at 4 weeks it was down to 26. But 1 week later which would now be 5 weeks after last chemo they retested and my ca125 went up to 40. Omg I spoke to my oncologist she still got me in to do my 8th session of last chemo but lowered the abraxan this time. So three weeks later just Dec 2021 I had my contrast ct to only show that a few sm nodules redeveloped in my periotic gutter measuring 6mm or less. Long story short, my oncologist has recommended that I start Zejula. She recommended a break from chemo as i asked if should do more she said the goal is to stop them from growing anymore and keep them small. I don't have the gene mutation at all but my oncologist said newer studies had actually proven good outcomes for people who doesn't possess this gene. I did research the world out of maintance therapy drugs and had all sorts of questions for my oncologist when I saw her. One of them was Zejula. Needless to say i am scared at all the side effects i have read. Not too much reviews from others on this drug. Biggest fear I have is I start it and it doesnt work. My oncologist recoomends i start taking vitamin d and calcium daily and she also said for me to start retaking my nausua meds 3 times day, half hr before each meal. When i start taking them.I was given those for my chemo. I actually hardly used them i did extremely well n chemo. Have to go do my updated blood work first though.QuestionHas anyone here been on Zejula or is currently taking Zejula who doesnt have the brca 1 and 2 mutation and are on would love your feedback. How about side effects for anyone using them and how your coping. Any feedback would greatly be appreciated. Thanks for letting me share my story.
I am wondering how people discover a recurrence. Blood work, ct, luck? I worry about missing it. Thanks
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Aug 2021 I had a hernia in my belly button and hernia doctor wanted to send me for ct, 3 days before i was getting pain and went to er, they found 2 20 cm tumours on my ovaries, fluid in my abdomen and they tested the fluid and came back with cancerous markers, that was a shock. For the next week it was it was test after test. Ct scan of my chest, then a scope and colonoscopy, then a mammogram. Everything came back clear so that eased my mind a bit. I had a full hysterectomy a month later, debulking and appendix removed. It came back stage 3 low grade. I started chemo in November, once every 3 weeks for 6 rounds. Had an allergic reaction the 1st time, weird taste, couldn’t breathe, saw stars, the nurses were so good, 5 ran in, gave me Benadryl, cortisone, oxygen, lorazepam, and felt better after 30 seconds but one of the scariest things ever, 2nd time same happened even though they slowed it down, so then my chemo was changed and no more reactions (also i did have a reaction 10 days after my 1st, full body hives). my last round is next week feb 16. I haven’t had much nausea. Days 1/2 i feel like superwoman (the meds) day 3 -5 not that great. Leg and body pains, indigestion, food taste bad, sore throats, runny nose, sores in nose, constipation, brain fog, my hair loss hurt as well so i shaved it. Now it’s finger/nail pains, hard to open things, discolouration. The last week before is usually when i feel best. I have also gained weight which i am not happy with. I lost 20 lbs with the tumours removed and gained it all back, they say it’s the chemo and meds and water retention, and will come off once i stop those, and get back to exercising. I have don’t sleep very well at night. I don’t feel tired and sometimes i only sleep 3 hours, wake up for 2 then go back to bed. I am having anxiety about going back to work, before this all started i was going to go on stress leave, now the thought of going back is getting me stressed. I am happy to have found this place though😊
It's crazy how those symptoms really recreate themselves to the day each round, hey? I find I have a lot of the same ones as you. I had a friend who lost her fingernails, so I use a protective coat on mine and so far so good, aside from the neuropathy.
I also had the herniated belly button, I wasn't positive, but thought it might be a "Sister Mary Joseph Syndrome" (but not sure. I just learned about it recently.
For the herniated belly button, check out "Sister Mary Joseph" syndrome. It's something often found in late stage cancers of the abdomen, it's super strange. I've attached the wiki. I often wonder if these are early versions of this nodule. https://en.wikipedia.org/wiki/Sister_Mary_Joseph_nodule
Totally welcome to join our teal tea for young people coming up! You'll find it under the events tab. It's been wonderful for me to meet with other women like ourselves who get what we're going through
Welcome to the site and sorry to hear of your diagnosis. It is tough when we hear the news. I too was diagnosed with Stage 3C low grade serous in 2021. It was tough to take the news but am thankful they found it.
The experiences you are having have common threads to many. It is all a very tough road and it seems long at times. I found that having the half way marker helped a lot and I celebrated it silently once I got there. There is not much one can do about the weight gain and it is much better than being underweight and trying to navigate this. I finished chemo last August and just started back exercising more frequently in January at home and returned to the gym last week. It will be a slow and methodical regime to get back as exhaustion/fatigue does set in sometimes the next day or day after and then I listen to my body and rest.
Inability to sleep is a hard one and I would encourage you to speak to your team regarding that to see if there is something they can do to help you. The same goes for your anxiety, talk to your team and see what they suggest.
As each of us go through our own journey to rid ourselves of cancer, our bodies adjust accordingly. The body goes through a lot and we are left with reminders of the journeys we have taken. From a book I read recently, "After years of hard treatment, I have a body nothing like the one my mother made." I feel this is true for all of us as we go through and continue our journey. It is all in how we look at it, when we look at it as to what our thoughts are on this.
I, for one, am determined to get myself as strong as I can should a recurrence occur. I need to be strong again, whatever that means to my new surgically adjusted body.
I have 4 grown children, 12 grandchildren and a grand puppy, a chocolate lab. I am 69 a little older than you I suspect. I live in a small town in Ontario….Deep River
Now to answer your question….my oncologist suggested I start on Zejula as I had responded so well to chemo and had my surgery was successful. Felt Zejula would help maintain my good responses. I am normally a very healthy person and have never been on any medication until chemo! I was a little taken aback when I saw the list of side effects but the drug company does need to cover its a##. I started taking the drug 200mg on Feb 7 2022. I did not have any of the nasty side effects. I did have a little trouble sleeping about once or twice a week I would wake and be up for a couple of hours. My energy level dropped a bit but was still able to carry on with things I enjoy doing. I went for my blood work weekly and got a call from oncology nurse checking in with me. Then on March 4 I was told to stop Zejula because my platelets were very low. I had to continue with more bloodwork until my platelets came up to a normal range. My platelets were in the normal range after my bloodwork came back from March 28 test. I had a phone meeting with my oncologist on April 1. She said it was okay to go back on Zejula and it was up to me if I wanted to go back on 200 mg or lower my dose 100mg. I know we are suppose to be involved in our medical decisions but I found this tough! After unsuccessfully trying to find any evidence that it would make a difference. I decided to take the lower dose. I guess it’s a personal decision and that was what felt right to me. Long story, short I have started back on Zejula at 100 mg it has only been 2 days so don’t know how I am reacting yet. I also do not have the BRCA 1 and 2 gene mutation
Please let me know what you decided about Zejula. Thanks for listening to my story, hope it helped
Welcome to ov dialogue. Thank You for response to my questions. As for Zejula, I found the same thing a little tired, i was also having same issues. But I started 200 mg Zejula as well, 3 weeks later platlets also dropped to low was off for a week. When I had my blood test my platlet count was back up but my CA125 had jumped to 194. I was really upset but my oncologist did not want to give up just yet she said sometimes it gies up before it cones dow. From what I read not that much! Also started having issues again pain discomfort etc. So she said for me to bavk on Zejula 100mg and she would order a ct. Well 3 weeks later gad mt Ct. 1 week later both ct and ca125 levels showed Zejula didnt work. Those some nodules that was found back in Dec 2021 have increased in size with the largest one 2.3 cm and also I now have multiple nodules in my upper abdomen close to the midline largest one 12mm. My CA had jumoed up again to 411. So I am now considered platinum resistant. I have started on Caelyx and Avastan about 2 weeks ago. So far no side effects I have Avastan every 2 weeks with Caelyx i am assuming every 4 weeks?
I am gong for my blood work tomorrow and they will check my CA 125. The last time my CA level was checked was Dec 21 so will be interesting to see what’s what.
Glad to hear there are more options when you are platinum resistant…..wishing you good results with no side effects 😊
i know back in 2019, i was told by my family dr, when i had a abdominal ultrasound due to abdominal issues back then, they found a 10mm cyst on my right lobe of my liver. But since then ct scans have never picked this up or mentioned this cyst in any scans since. So i called my oncologist and discussed this recent mention of this 2 cm overlaying my right lobe of my liver, she doesn't believe this is the cyst. I asked her how is it that 2 previous radioologist failed to report this on my ct scan and this one did. Being that I had. Delayed ct contrast it stood out more. Delayed contrast is where they put in half the contrast in your iv wait ten min do a scan then put in the rest of the contrast wait another 10 min and then do final scan. This way it really highlighted my kidneys and uterer in case their were issues with them so they could see a better picture.
Long stort short i asked my oncologist ok why was it not mentioned. She mentioned that the previous 2 ct scans didnt exactly say where the mutiple nodules where jyst that they where toward the midline. This radiologist just happened to pinpoint it better.
Ok so question i brought forward.. how can my liver be read and said as unremarkable meaning no issues with liver from the ct scan on the March 1. My oncologist said your liver is unremarkable it just the on the. Outer surface lining of the liver. Like xxxffff.
U can imagine my state of mind since this report!!!!!!!
I am sorry to hear of your recent diagnosis and the difficulties you have been experiencing emotionally, mentally and physically. It is a lot to deal with.
Welcome to the group and thank you for being trusting to be so honest about everything with the group. You are allowed to feel whatever feelings you are experiencing both positive and negative. That is what this group is for.
Before I say much more, have you contacted your team to let them know what and how you are feeling. They can prescribe medications to assist with side effects from chemo and can adjust them if needed as well. They also have resources to set you up with someone to talk to about the feelings you are experiencing. If you have not done so yet, I would urge you to reach out to them.
You may also want to ask if the side effects were possibly worse due to recovering from being sick and your body fighting whatever you had at the time. It may have made your immunity lower to combat the chemotherapy.
It is wonderful that your husband is supportive and hard knowing your children live a distance away from you. Perhaps you might want to open up a discussion with your husband about how much he wants or doesn't want to know going forward and also how to tell your children the same. As hard as it is to tell them, they may want to know the information. It is up to them to determine how they want/can support you and hard as it is....for you to accept the same from them . It was the most difficult part of the journey for me as I have always had the role of the caregiver both at work, home and with family. This disease is unforgiving and supports help immensely through this journey. It is very difficult to lose one's you love to this disease and I feel you have lost many. The counseling piece of this may help you quite a bit through this piece of it including what and how you want to proceed through it.
Don't apologize for how you feel even if it is negative. It is a lot to process and takes time. I hope some of this has helped. If you don't have it already, consider getting a copy of "By My Side". It has information in there for both you and your family.
I will end with a virtual hug that I am sending to you.
Thank you for reaching out to us all.
You are being how you need to be right now. Your feelings are real and it is okay to say what you are feeling. We hear you. I am turning 70 in August and am enjoying my life very much. It is very hard to get the cancer diagnosis.
I second everything Strongwoman said.
Best wishes moving forward
also sending virtual hugs
Terrible that you're side effects from the chemo are so rough on you. We all respond in our own way; some coasting through, others having lower tolerance for discomfort or for whom the drugs do force out the worst of effects. You mention your doctor has prescribed meds to help offset pain so I take it you're keeping him/her informed on how you're feeling. They do try their best to find ways to mitigate the discomfort, whether it be with medications, lowering doses, slowing down the infusions themselves or even looking at alterative drugs that might produce an easier treatment. I do hope they can resolve some of the discomfort for you soon.
You referred to a 'booklet' in your post so I assume that you have a copy of By Your Side as a reference tool. Do use it and the Ovarian Cancer Canada website as a primary source of reliable information on our disease. I always found the booklet helpful in preparing for consults with my oncologist and her team. As for OVdialogue, use the search bar and type in key words that might pull up older conversations on topics you're interested in. And it does help to connect with this community. Once a month OCC run Teal Teas for members to connect on the zoom platform. You can find that schedule on the OCC website under Events, Local. And, of course there is our community here that is open to you 24/7. I also host a live online chat every Thursday at 1pm EST that you might like to check out. It's a chance to get real-time feedback and just connect with others who 'get it". You can join those chats by clicking on Teal Thursdays in the Discussion topics listed on the home page, after signing in.
Finally, as you've expressed in your post, this diagnosis is emotionally draining for you...and the effects not limited to just you but your entire support network. I do encourage you to get a referral from your oncology team to your cancer centre social work department. I know the relationship I've built with my social worker here has been instrumental in helping me maintain perspective and balance and enormously helpful supporting my navigation through the medical system.
Please keep us posted and do reach out anytime we can be of help or if only to use this site as a sounding board. Try to stay strong, be curious, ask for help when you need it. I'm now in my 6th year of treatment so while I'll never be cured, I have found ways to live successfully with the disease and wish the same for you.
This group is an amazing source of information, so glad you found it
I wish you good health throughout your journey.
Well put....learnings! We all learn as we go along. It is up to you how much information you want to receive.
I am glad you are receiving a copy of By My Side...it truly has some great information and things to ponder in it.
Crying ia good and such an amazing relief though physically taxing once you are done.
Let us know when you get the results.
Reach out anytime you need...we are all here for you.
Good for you for embracing your diagnosis and being open to learning more.
You will find By My Side very helpful and informative.
Don't worry about not being able to read the information in other forms. Knowing what you have, treatment, recovery etc that is relevant to your diagnosis is what is important. This is so you can have dialogue with your team. If you are unable to, ask someone to be with you that can digest the information and relay it in a different way to you.
I was the same as you, I found out I had cancer alone in hospital due to CoVid. It was a difficult time and the hospitalizations the same for not being allowed anyone in.
If you are ready, ask any question you may have and you can also look for information in this forum as well.
Glad you have reached out. It is a big step forward.
New to the forum so figured I should introduce myself. My story is very similar to so many of you on here; my diagnosis came as a complete shock! In spring 2019, I began to develop a persistent cough and was diagnosed with pneumonia, initially at a health care clinic, and then finally by my family physician. I was given two series of antibiotics which had little effect on my symptoms. Throughout the summer and into early fall, my energy levels decreased. By early November, I was experiencing shortness of breath, utter exhaustion, loss of appetite and pain in my chest. Despite being in constant contact with my doctor, I was not getting any better. At the beginning of November, she requested an urgent chest x-ray. This was my first x-ray as I was diagnosed as having pneumonia without an x-ray. I hadn't even got to my car when my cell phone rang; it was my doctor. She told me to go to the emergency department right away and that is where my journey began...
I ended up having a malignant pleural effusion which required regular draining. While malignant, the doctors were still unsure of the actual location of the cancer. They suspected gynecological in origin but further testing was required to determine the exact location. Eventually, I was diagnosed with Stage IV ovarian cancer which had presumably started in my left fallopian tube.
The initial plan was for 3 rounds of chemo, surgery/debulking and then another 3 rounds of chemo. Due to COVID, my surgery was cancelled and I ended up having 6 rounds of chemo, then surgery and then another 3 rounds of chemo followed by Avastin. I was NED for a period of 11 months until a lesion developed on my liver which was treated with the CyberKnife. The radiologist seems positive about the outcome. I'm back on chemo due to another recurrence but my health care team appears to be positive.
Throughout my cancer journey, I have had nothing but tremendous support from my family, friends and my oncology team. I dealt with all of this with faith, positivity and lots and lots of humour!!! I am so thankful that I have found this forum and look forward to chatting with my other teal sisters!
Thanks for listening
My story began like so many of you out there. In spring 2019, aged 68, I was diagnosed with pneumonia, initially at a health care clinic and then finally by my family doctor. I was given 2 courses of antibiotics which had little to no effect on my symptoms. Throughout the summer and into early fall, my symptoms got progressively worse. My cough worsened, I was suffering from extreme fatigue, loss of appetite, pains in my chest and shortness of breath. I called my family doctor and she made a referral for an urgent chest x-ray. This was my very first chest x-ray since I had been diagnosed with pneumonia without having an x-ray. I had yet to reach my car after the x-ray when I got a phone call from my family doctor asking me to go to the emergency department. This is where my journey began...
I spent a week in hospital where they drained many liters of fluid from my right lung. I was told that I had a pleural effusion and that the fluid would be sent off to be analyzed. The results came back which confirmed I had cancer. After numerous medical appointments and what seemed like endless testing, I was diagnosed with stage IV ovarian cancer.
My initial treatment plan was for 3 rounds of chemo, surgery/debulking and then another 3 rounds of chemo. My surgery was ultimately delayed due to COVID so I ended up having 6 rounds of chemo, surgery/debulking and then another 3 rounds of chemo. After my chemo, I was put on Avastin and was NED for a period of about 1 year. I had to stop Avastin due to a fall and 2.5 months later, I had my first recurrence in the liver. This was treated with the CyberKnife. My radiology oncologist seems optimistic with the results.
I recently started chemo again as I have another recurrence. I believe the initial plan is for 3 rounds of chemo (maybe more) followed by niraparib (Zejula). I have a meeting with my medical oncologist next week to confirm.
Throughout my cancer journey, I have had fabulous support from my family, friends and my whole medical team. From the beginning of this journey, I have dealt with this through faith, positivity and lots and lots of humour! I am glad I found this forum and look forward to chatting with my fellow teal sisters!
Thanks for listening!
I assume you have a copy of Still By Your Side, the booklet that OCC produces for those in recurrence. It can be a helpful reference tool. And I list, under the topic TEAL BY THE MONTH on your OVdialogue home page a list of current events, mostly sponsored by OCC, that are helpful education. LInks to more information on the event and for registration are always attached. And, of course, there is this forum where we share our stories back and forth....one day asking for help or information, the next offering encouragement to another Teal Sister who may be struggling. And finally, for those who like some more immediate, real-time, dialogue we hold a weekly live online forum on Thursdays at 1PM ET. You need only sign into OVdialogue and click on the Discussion Topic TEAL THURSDAY.... to participate in the chat. Love to have you with us, any time.
As Elsie13 said, wishing you success with your treatments and hoping you'll keep us posted.