Encouragement and Support
Life after Treatment
Health Practices and Wellbeing
Just want to talk
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Re: Maintenance Therapy for Who?
. I had the same concerns after my frontline chemo and wanted to be put on Avastin for maintenance after I was done. I was NED (no evidence of disease), stage 3C epithelial and non BRCA1/2. The idea of just “waiting” for a reoccurrence was hard to handle (especially at 80% chance of reoccurrence). However, my understanding from Onc was that frontline maintenance is not covered (I’m in Ontario) by OHIP for non BRCA1/2 and only offered for maintenance after second line chemo. Unfortunately, I recently reoccurred and am in second line chemo now and Avastin is now in discussions. Also if your NED, maintenance drugs and trial drugs tend to be offered later. This is my experience thus far but each treatment is unique to prognosis and response.
Re: Maintenance Therapy for Who?
Hi Lucci22, just read your thread and concern. No, you are not alone. My Mum has had the same experience, but this is actually a good sign. Oncology won’t interfere if all is well. If your Mom is checked every 4-5 months and CA 125 marker is normal, they leave well enough alone. She should continue to enjoy life, keep track of any symptoms and go for check ups. If there is nothing to be concered about, she’s doing well. Don’t take it personally- they didn’t forget her- they just have to care for those in need. So, bravo to your Mom- she’S in recovery. 🙂
Re: Just diagnosed with reoccurrence...
Oh my goodness Trinity, you’ll never know how your note touched my heart and lifted my spirits. My husband and I are driving through the beautiful hills of Tennessee in our way to a wedding in Jasper, Georgia. We decided to take this trip prior to me starting my chemo treatments in the second week of June. Yes, it certainly is a time of renewal and although the thoughts of chemo again are a little overwhelming at times, my faith is strong and I do believe God’s not finished with my journey just yet, every day is a blessing 😊... your beautiful story of your Mom’s journey is a breath of fresh air and a huge encouragement to me. Also your advice on diet and my emotional state is duly noted. I send your Mom my most heartfelt good wishes for continued good health and to you, you are a devoted and loving daughter who is an integral part of your Mom’s success, you are a treasure I’m sure she values beyond words. I will share this with my daughter, she’s 52, my heart and inspires who fought her own battle with breast cancer several years ago. Thanks again Trinity, we’ll chat again 💕
Re: ca125 numbers
I have been confused about CA 125. Diagnosed July 2017 with high grade serous carcinoma stage 3c/4. Prior to primary treatment I was around 4000. It went up to 8000+. And it came down after surgery and first chemo to around 18. Cancer recurred 6 months later. I have now just finished six rounds of carboplatin and paclitaxel (once every three weeks). CA 125 is now 20.
I’m not sure what this all means but the CA 125 seems to reflect what is happening with the cancer so it gives me comfort to see it so low.
Re: New member
Wow I guess things are really normal for me then. Your husband is a warrior too, it seems. So is mine. We are so lucky to have that support. Interesting that today I just rested. I didn’t know why I felt the need but it seems it just needs to happen. Thank you for sharing
Re: I just want to hide out.
Kastoyle’s, Karenmari53, and Flowergirl, thank you for your comments and suggestions. I really appreciate it. After I posted my comment last week, I thought enough already! At that point, I was about a week and a half post chemo (my last scheduled one) and it just seemed to be going on forever, and I was feeling worse and worse. I felt really beaten down. Finally I decided to take a steroid because that always makes me feel better and sure enough, it seemed to knock me back into something approaching a life. I felt so much better I couldn’t believe it. And then I had a telehealth conference with my oncologist from the BC Cancer agency to review my final CT scan. It’s all good! No more chemo for now and just get on with my life, grow some hair and have a summer. Check up in three months. She said I could call it a remission if I liked (although that language isn’t really used for solid tumours like one has with ovarian cancer, she said), but the language doesn’t matter. Bottom line I am now in the best shape I have been since diagnosis and it’s all good.
Now I have something new to adjust to - life without chemo!
I would love to be in a support group and was for a little while but it sort of fell apart and there doesn’t seem to be another one in my town of 60,000 people, which I find astounding. I will keep looking. I have tried an online support group but it really didn’t work very well. Not enough people.
I sure do appreciate you. I actually felt much better as soon as I posted my initial comment. Just needed to get to a point of desperation I guess. Thank you for being there. ❤️
Re: Brand new to the club
, I think the hardest part is when you don't know exactly what you are dealing with. I had 2.5 months between being told there was some kind of cancer and surgery, and that time was horrible. Once I had my surgery, got the pathology report, and had the treatment plan I felt a little bit better. I found the surgery (radical hysterectomy) recovery to not be too bad-- I didn't have a lot of pain. I had 6 rounds of Carbo/Taxol after surgery and I found that breaking each chemo cycle down into individual units of time to be helpful. You soon learn what to expect on what day after chemo. It's so easy to be overwhelmed by all the unknowns and what-ifs, I found using mindful techniques to be really beneficial. Hope you get some answers soon.
Re: New here.. just diagnosed with high grade serous OC. Any Ontario ladies here?
Thank you for your words of support. I actually met with my oncologist in London yesterday, and he’s hopefully optimistic that the two tumors contained in my fallopian tube have not spread yet. We have to do a CAT scan, and a debulking surgery to be sure, but because my initial hysterectomy surgery showed no evidence of cancer in my one ovary and uterus, he said theres a great chance it hasn’t spread beyond the pelvic region. I will have to do a round of chemotherapy to get any rogue cells that might be floating around in there, but I took that is great news! Now I just have to get past The scan and next surgery, and I might have a shot at beating this! I feel like I can breathe for the first time in 2 weeks.
Re: Brand new to the club
Thank you for your response. I’m feeling a bit better mentally today. I think a diagnosis like this really puts you on an emotional roller coaster. I appreciate your suggestions. It’s true when we met with the doctor ( was unsure if anything at that point) it was all a bit surreal. She was very thorough but really between my husband and I I’m not sure what we retained outside of ovarian cancer. I’m trying to not go down the google spiral but it’s hard not too. I did receive the book which I have looked at- small doses... lol.
Re: Looking for any Stage 1C Serous Carcinoma High Grade (still working after cancer)
.. thank you so much for posting all you have been through. Wishing you all the best as you start this round of chemo and radiation. Glad you have the energy to continue on your work and that it helps you cope - yes, whatever gets you through. Take good care of you and we hope to see you around the site.