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BRACA negative survival stories

Sashay2020 profile image
17 Replies

I always enjoy reading someone else’s good news (major or minor). When I am feeling a bit shaky, hearing that a fellow teal lady had a CT scan that shows tumors have shrunken or that a CA125 result has been brought down within normal range steadies me. I am BRACA negative, finished front-line chemo in early November (after debulking surgery in June). Just wondering how BRACA negative ladies have fared after front-line chemo. Thanks, and

Best Christmas and holiday wishes from Louisiana

Sashay

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Sashay2020 profile image
Sashay2020
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17 Replies
JoboCa profile image
JoboCa

Hi Sashay - here's mine. I have ovarian carcinosarcoma, which I'm told is a very aggressive form of ovarian cancer. I've just marked the one-year anniversary of my last frontline chemo infusion. My doctor says I'm in clinical and radiological remission. I'm delighted, but I must say I live in 3-month chunks until my next CT scan.

All the best to you and the rest of our teal sisters. Let's all hope for a better 2021.

Sashay2020 profile image
Sashay2020 in reply to JoboCa

Thanks so much, JoboCa for sharing your story. I finished front-line chemo in November and am not scheduled to see my oncologist again until March. My daughter has planned a little trip for me for my 70th birthday in April. I’m looking forward to that as I have not traveled a lot and hope I will still be in remission for my little adventure. Here’s to a happy 2021!Sashay

Nadie2018 profile image
Nadie2018

Hi Sashay. I am Stage 4 BRCA negative. I recently hit 2 years post diagnosis. I recurred 2-3 months after I completed frontline chemo and debulking. The good news was I was kept off chemo for a year by using Tamoxifen and then Anastrozole bc I am 80% Estrogen/Progesterone sensitive. I went back on chemo in June and had great results. I have continued on Avastin for maintenance and had a little bumpOn my CA 125 after only 8 weeks. I am now on Cytoxin (orally) in addition to Avastin. My docs run a CA 125 with every Avastin (3 weeks) to keep a close eye. In spite of all that, I feel good!! Thankfully, there are so many more options for treatments than ever before. I wish you long periods of stable disease. As my docs explained, it is a continuum...we just have to keep after it.

Nadie

Sashay2020 profile image
Sashay2020 in reply to Nadie2018

Nadie, thank you for responding. I did not know anything about estrogen or progesterone sensitive tumors. I will ask my doctor about that. It is good to hear that you are doing well. Thank you for helping me over a rough patch 💪🏽 May your CA125 stay low. 🙏🏽Sashay

GwenHP profile image
GwenHP

Hi Sashay, I tested negative for BRCA mutations and am a 15 year survivor. I was dx in 2005. Had one recurrence but have been cancer free since my last chemo in November 2008. I was stage 3c high grade serous.

Stay safe and best wishes - Gwen

sticky3006 profile image
sticky3006 in reply to GwenHP

that's amazing! Which treatment did you have second time? thanks x

Sashay2020 profile image
Sashay2020 in reply to GwenHP

That’s wonderful, Gwen. I’m happy for you. Thank you so much for responding. You have lifted my spirits. May you remain cancer free!Sashay

Luci22 profile image
Luci22 in reply to GwenHP

That's amazing 15 years! Did you do anything else on your own, aside from the standard treatment?

Newquilter66 profile image
Newquilter66 in reply to GwenHP

I am 3C high grade serous. So glad to hear someone is doing well. My chemo was postponed due to deep wound from surgery. Had first chemo carbo and taxol Dec. 14th. Had to have iron last week because of low iron. Next chemo January 7th. Just started losing hair. Have news boy cap to wear. Didn’t have nausea with first chemo, and hoping I don’t this time. Hope you have a great 2021. I pray everyday we all recover.

Salavie profile image
Salavie in reply to GwenHP

Wow wonderful news for you ❤️

Newquilter66 profile image
Newquilter66 in reply to GwenHP

I am 3c high grade serous and have had two chemo. Have surgical wound that is taking long time to heal. I pray periodically through the day for it to heal and for a cure for all cancers. . Had BRCA test today and am hoping for negative results. Had second chemo today and am having trouble sleeping. Doctor prescribed anxiety pill because he said I may be thinking about the cancer too much. Good luck to you ladies and prayers that we all are cured.

Here2Day profile image
Here2Day

Hi Sashay. I am a OC survivor, dx'd 09-2018 with Stage 3b HGSC, BRACA negative. Responded successfully to frontline chemo using taxol and carboplatin. Doc suggested entering a clinical trial to test PARP inhibitors which studied progression-free survival using PARP inhibitors and PL-1 inhibitors (who the hell knows what all that means!). I also did it just to feel like I'm doing something pro-active, rather than twiddling my thumbs waiting for the beast to return. Plus, it was a way to give back and help the cause... I'm happy to say I've been NED for the entire time, although I am wrapping up the clinical trial next month, so I'll be curious to see how my numbers are after that. There are no other meds to consider since i'm BRACA negative, so my fingers are crossed... and my toes... and my eyes. Best wishes to you. May you find stability and a clear path to good news!!

Sashay2020 profile image
Sashay2020 in reply to Here2Day

Thanks so much for responding. I’m glad that you are doing well. I was offered a parp inhibitor after I finished front line chemo, but I decided I just wanted to be chemical free for a while. I asked my doctor how long he thought I might be in remission. He told me and I decided to just see how long I can be in remission without meds. I just hope I stay sensitive to platinum chemo. Hope 2021 is a great year for you. Best wishes from Louisiana.

Sashay

mobo1 profile image
mobo1

Hi Sashay! I am also from Louisiana and I am turning 70 this year! I was diagnosed in 2010, stage 3C. I have recurred twice, 2014 and 2017. I am BRCA negative. After I finished chemo in April, 2017, I was put on the PARP inhibitor Zejula but had too many side effects from it. Some months later I was switched to Lynparza which has minimal side effects for me. I have been NED since. I continue to have fatigue, but otherwise I am active and enjoying life! I hope everything works out well for you and you stay healthy!!!

Sashay2020 profile image
Sashay2020 in reply to mobo1

I am so glad to hear that you are doing well and I really appreciate your response. I’m not sure if I am stage 3 or 4 at this point. I will be 70 next month. I finished chemo on Nov 5th and decided against Zejula. I didn’t know Lynparza was available to BRACA negative patients. I just really needed some chemical free time to regain my strength. I have not traveled very much, but my daughter and I have a trip planned to US Virgin Islands on my birthday. My oncologist thinks OC may has metastasized to my lungs. But I am feeling well enough to travel and will face that possibility when I return. You have lifted my spirits and I thank you for this. I hope you continue to do well and enjoy life!

Sashay

mobo1 profile image
mobo1

Let me know how you're doing and what you and your oncologist decide on. And have a wonderful trip with your daughter on your birthday!!

Sashay2020 profile image
Sashay2020 in reply to mobo1

Thank you! Will do. 🙂

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