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Hello
I had my chemo via the abdominal port at Sunnybrook 2018. No problems with this treatment.Easy Peasy access. I believe it was the game changer for me!
I had a temporary ostomy and significant weight loss! Some foods to try to help thicken output…tapioca with protein powder (my staple), potatoe chips ( can binge guilt free).
I am Cancer Free, just had my 5 year anniversary since my debunking surgery!
So wonderful to have great family support. 💕
I am open to connecting on Facebook if your mom wants to reach out
Sharon Vanderburg0 -
@SM222
Hello and welcome to our site. Today at 1pm we host what is called Teal Thursday. It is an online forum to discuss whatever is on your mind and are feeling that day. To join, just find the discussion which should be the first discussion thread on the site. You will need to refresh your page to see any new posts from others posting.
Now that I have said that. I am truly sorry to hear that your Mum is going through this. It is all difficult to receive the information, process it and continue on healing at the same time. There is a free book available to you which is called By Your Side and is available in both paper and digital form. Here is the link to it: Ovarian Cancer Canada - Support and Resources (ovariancanada.org)
It was very helpful to myself when I was diagnosed 2 years ago. I have primary peritoneal cancer which is treated exactly the same as Ovarian Cancer. I was 49 years old when diagnosed and have LGSC and was Stage 3C. Many of the ladies on this site are HGSC as it is the most common type of Ovarian Cancer.
As for the eating, I will contest that I had much difficulty after my surgery with eating. I ate very small amounts and slowly built myself up. I had difficulty swallowing which I attribute to the tube being down my throat during surgery. I craved things like melon as it was soft and full of moisture. In the beginning, it would probably take me an hour to eat my breakfast, believe it or not. I would have my fruit first, then a yogurt and then an Ensure. That was my routine for breakfast for a long time. I eventually graduated to some oatmeal and found it did not take as long to eat. Dinner was as slow to come as breakie and I stayed with safe things like rice with some sort of broth. I had fish as my first meat and built up. I still have difficulty with beef to this day. I, for one, can say that using a powdered Veggie Green (which I found at Popeye's) helped immensely. It can be mixed with water and does not taste bad. In fact, I currently don't have an appetite in the morning so I have my Veggie Greens, Restoralax mixed with water with my meds. I also found using a protein powder helpful instead of the Ensure. In the beginning, I would get full easily and that took time to overcome. The diarrhea, yup, check, can say I had that. So bad one day, my Mom was here to help take care of me and I didn't even make it to the toilet. Came out all the way to the bathroom. But seeing as she is my Mom, she got me all cleaned up and then cleaned it up no problem. Exactly how you stated it "manhandled" is how I felt. Like they took a handful of my insides, threw them to the side and then stuffed them back in. My insides were not happy for a long time. It will be trial and error with your Mom is all I can say. I had difficulty with getting the gas to pass both burping and flatulence and found that ginger helped a lot. Walking daily helps a lot and with strength. Short distances with assistance and then eventually without is good as well. Those are a few things to get you started. Throw out any questions you have.
As far as the treatment (chemo) that your Mom will be receiving the ladies with that type of cancer will be best to answer that. I had one round of chemo which was Carboplatin and Paclitaxel for 6 rounds. It was a journey that is for sure! The port will help and I found I did not feel as ill when I utilized it for treatment.
Your Mum sounds like she is doing amazing. I will write more later and hope you can join us today.
I have to run and get my message ready to start the chat today as our usual Moderator may be a bit late today to start it.
Glad you found us and steady and slow is how it goes initially!0 -
@battleoflife12018
A BIG congrats on your 5 year NED celebration! How wonderful for you! I am excited and in awe of how that must feel! So wonderful and a journey in and of itself.0 -
Thanks
so grateful for my health care🙏1 -
@battleoflife12018. Congratulations on your 5 year mark!! Such a milestone. May you stay strong and well1
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Thank you for your kind words
Sharon1 -
Hi @battleoflife12018 thank you so much for those tips! I can't believe we didn't think of potato chips, I got some for her yesterday and she loved it! She started her chemo on Friday, so said she will reach out to you via facebook sometime next week. Thank you so much for your kindness
And a huge congrats for the incredible milestone!
Hi @Strongwoman thank you so much, the veggie greens sounds like a great alternative. She hasn't been liking ensure so I will also try another protein powder instead. Thank you again for these great tips and resources. She wasn't up to attending the teal thursday last week, but will see if shes up for the next one. Thank you again, I have ordered the book as well. Hopeful that the port will make it easier for her. Thank you again
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HelloTeal Sisters! I had a hysterectomy and bilateral oophorectomy in July of 2018, revealing that I had high grade serous ovarian cancer, stage 2C. This was followed by IP chemo, September through February. What a stressful time!! A few months later, with my new chemo curls, my mood greatly increased. I gave up hope of being "cured" when diagnosed with a recurrence in June 2022. (Apparently I was fortunate to go that long??) I did 6 cycles of carboplatin, July - December, 2022, followed by a CT scan result of "all clear" . . . . . for now! I am currently on my 4th week of Zejula, 100 mg, which is going well thus far. If my blood work is okay I will go to 200 mg next week. A little nervous about this drug, but overall, life is good!0
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@CrazyCat
It sounds like from your post that you have had both some ups and downs. It sounds like you are in an "up" cycle. I bet it feels good. I would like to believe that inside all of us there is a little 'nervousness' or 'anxiousness' that we feel even when things are good. It would be difficult not to given what many of us faced and have gone through up until that point. Now, on to that, go do YOU! Find those things that make you happy and bring you joy and enjoy them. Do things that due to treatment etc you were either unable to or were restricted by and find a new outlook of how it feels to do them. I wish you the best journey from here on out. Keep us posted from time to time and/or join us for our Teal Thursdays.
Take care of YOU!0 -
@CrazyCat,
I know the mental ups and downs are stressful. Do you! I know my daily outlook has changed so much since diagnosis. Try to not worry about tomorrow because you would miss today's joy. You go Teal sister! You got this.0 -
Hello!! I am a mother of 2, married.On March Break I did a TV Ultrasound to see my IUD and I found in my left ovary a Multilocular cyst with thick septations, and peripheral vascularity.Doctor call me and had a conversation and asked to do the CA125 asap. I am only 34 years with cancer in my family for breast, lung, intestine and my brother with leukemia. CA125 returned negative but I believe its to early to catch any antigen in the early stages.Waiting for the next TV Ultrasound in April 18th.Someone has the same story? I thought I had to be referred to the GO Right away.I also was diagnosed with Endometrial Hyperplasia at age 30 and I am in use of IUD to control my heavy periods.Thank you
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@ButterflyGirl
Hello and welcome to our site. Your post has multiple concerns and I will do my best to assist you.
If I am reading correctly, your topmost concern is that the TV Ultrasound showed something and you feel it is being dismissed and/or not being given the attention you feel it needs. Is that a safe statement to say?
Surprisingly enough most Ovarian Cancers are not hereditary in nature. I learned this recently and was quite surprised. I do understand your concerns with other cancer types present in your family history as many of us have shared those concerns initially as well. Despite having my tissue being looked at twice there were no findings to support that nor could they find anything definitive to perhaps assist with targeted therapy. I knew going into it that there was a high probability that findings may turn up nothing.
Regarding CA 125 levels most Oncologists do not rely solely on these number markers. They can vary greatly and can have little to no impact on direction of treatment.
Are you currently experiencing any symptoms or did you prior to your TV Ultrasound? Are you experiencing issues with your IUD?
Referrals to Gyn Onc (GO) are not automatic (to my knowledge) in the presence solely of an initial concern. I believe more common protocol is waiting and watching and repeating imaging if an issue is presented. This may not comfort you but is the reality especially in absence of symptoms and/or medical markers. Most of us on this site have not known we had our disease until an alarming symptom presented itself. Some have been fortunate to have it diagnosed early but again I believe with presence of symptoms of some sort and some unrelated to the gyno system itself.
Like myself going to ER with a GI bleed (which I did not even know that was what was occuring) to first be informed it was colon cancer (after colonoscopy) and then biopsy returning with markers for Ovatian Cancer.
I understand your concern and my advice would be to write down any symptoms and menses (period) related issues until either your next physician appt or if imaging is being repeated.
I hope this helps you some and puts your mind at some ease.
Take care of you!0 -
Hello Teal Sisters,
I’m 36 years old, a mom of 2 little boys, a wife, an engineer, a coach, an artist, a shower-singer, and a change management advisor.
I recently also became an ovarian cancer warrior and writer, as I started blogging my journey. Check it out if you’d like! www.OCwarriorQueen.com
I’m using this blog both as a means to externalize what I thinking, feeling and experiencing, and also to spread awareness.
I started experiencing, what I now realize were milder symptoms of ovarian cancer, in the spring/summer of 2022. I thought I was developing IBS or IBD.
It wasn’t until February of 2023 that my symptoms evolved into more “specific” symptoms and after doing some research, I am realizing how lucky I am that I listened to my body and went to my doctor.
I had lost weight, was having severe cramps, and pain after intercourse, my blood pressure was really low, with a hight heart rate, and I started to bleed 10 days earlier than I usually would. All of this together was sounding a 1000 bells and thankfully, this led to an ultrasound, which then led to an MRI and that led to be receiving the famous “come accompanied” call from my doctor on March 28th. A 8-10 cm mass was discovered on my left ovary.
I then met my oncologist on April 5th, had my surgery on April 20th, where the mass was removed. It had grown to 15 cm!
I had my post-op appointment where we discussed the biopsy results and a treatment plan. The good news is that no other tissue that was biopsied, other than the mass has cancer cells. Everything was contained within the mass! The biopsy of the mass itself revealed High-Grade Serous Cancer, with an insignificant presence if neuroendocrine cancer cells. Because of this extra “surprise”, a few other tests have been scheduled.
It’s odd to say the word “lucky” in the same sentence as cancer, but I truly feel lucky and grateful that the cancer was detected early, and swift action was taken by my medical heroes, two amazing women to whom I owe my life: my family doctor and my gynaecologic oncologist!
Since HGSOC is an agressive cancer, I will start chemotherapy on the 31st of May. It will consist of 6 rounds of carboplatin/taxol, 1 treatment every 3 weeks.
If you have any tips on managing and y with hair-loss, as well as chemo side effects, I’m all ears!!
Thank you 🦋
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@OCwarriorQueen welcome to our community and so glad you found us. Establishing that blog is an excellent idea. Writing is great therapy for you and sharing your journey will help inform others and expand awareness.
Have you accessed the Ovarian Cancer Canada website (ovariancanada.org) yet. Being new to this disease it's sometimes difficult to sort through all the information out there. But you can be assured anything on the OVC site has been fully vetted for accuracy. I do recommend, if you haven't already, order the booklet OVC produces called By Your Side. It's an excellent resource to inform and help guide you through the disease. And given your age you may want to connect with other peers through the monthly Teal Tea for young survivors. I post the schedule for that here on our discussion board or you can obtain it from the OVC website. We also run a weekly get together every Thursday at 1pm EST that is online but real time in discussions called Teal Thursdays. Anyone is invited to attend and you can join by just signing in to OVdialogue and then clicking on the topic Teal Thursdays.
I hope some of this helps. I can assure you there is hope out there for us; for cure and if not, for learning to live with the disease. I'm an example of someone who has recurred several times so considered incurable but who has extended themselves from a prognosis of 3 years to an actual of 7 and still going strong. Just know that no matter what chemo brings for you you're not alone. Our community here is over 1000 strong and sending their prayers for successful treatment for youu.
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@OCwarriorQueen
Welcome to the group and thankful you had an early diagnosis (as per your post).
I too write but not publicly and is part of my Legacy work.
Chemo treatments can affect everyone so differently that it is difficult to respond specifically. Letting your team know how you feel afterwards can help in discovering medications that may assist in decreasing side effects. I found my 2nd treatment the worst of the 6 of them. After that we had the right regime for me that worked. Resting is important and walking when you feel well enough is good as well. Your team will guide/advise you through your first one.
As for hair loss, I wrote a post entitled 'So they say it is just hair'. You may find it helpful. My scalp hurting was the worst part of my hair loss.
Most important, make sure you have supports around yourself and the family for when you don't feel well. You are sounding like you are doing well thus far.
Reach out anytime and/or if you have any questions you can't find the answers for.
I will be thinking of you on your first chemo day.1 -
As others have said your experience with Chemo will be unique, but I wanted to share that I found that CBD oil was a great help with the leg cramps I had 2 days after each cycle. It was prescribed for me and I found it also helped me relax and sleep better. Losing my hair was an adjustment but it was also freeing in many ways. I found I preferred wearing soft bamboo hats rather than wigs. Do what works for you.1
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@OCwarriorQueen I had 6 chemo treatments , 3 prior to surgery and 3 after. I felt really good chemo day and the day after. The third day of my journey was the hardest. I have to agree that I was anxious about my hair loss but it was quite freeing. I was diagnosed a month before covid shutdowns and I rocked my bald head proudly as the "sunshine room" was closed.I found there are many things that help with managing discomfort and you will find what works for you. I am approaching 3 yrs if remission (July 23rd) and feeling great.
We all share this journey with you, and together we are strong.2
