Olaparib for OC stage IV used for 7 years - stop or keep taking? Risk
Hi,
Diagnosed with OC stage IIIc in 2015 at age 37, brca1+. Extensive surgery, platinum chemo x 6. Reccured 12 months later - 5 doses of caelyx and restaged to IV. On Olaparib 300mg per day since April 2017 (started from 800mg which I didn't tolerate, then 600mg- didn't tolerate as well). Never any problems with bloods counts, tolerating well, ca125- 8 every 3 months. CT scans every 3 months - clear. No other health issues.
Doctor wants me to stop taking olaparib die high risk of developing bone marrow and blood cancer.
Reading lots of stories where OC reccured in 12 months of stopi g olaparib... I am afraid of both (recurance and bone or blood cancer). Can't make a decision. Which risk is higher - recurance or blood&bone cancer? Anyone has any experience, their doctors opinions? Or articles I could read? I'm 46 now and not ready to deal with any cancer again 😢
Thanks
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@marileenewman I apologize for missing your response to my questions.
Since you disagree with your oncologist's recommendation it would seem that a second opinion would be a good idea. Are you located in the U.S.? If yes, then here is a website where you can find a National Cancer Institute (one of the Institutes with NIH) where there is ongoing research and cutting edge cancer treatments. Mayo Clinic is on this website.
Find an NCI-Designated Cancer Center:
-- https://www.cancer.gov/research/infrastructure/cancer-centers/find
If you'd like to self-refer or would your current oncologist or another medical provider to refer you to Mayo Clinic then here is that link:
-- http://mayocl.in/1mtmR63
How was your appointment with your oncologist? Do you have new information to share and have you made any other decisions about what you'd like to do going forward?
I was diagnosed with BRCA +2 OC in January 2022 stage 3C.
my recent appointment with my oncologist was fine.
CA 125 stable. She does not think I should go back on an PARP inhibitor however, I think I should especially after reading Zanetta 78. I was on just one 100 pill twice a day so a total of 200mg. I worked in pharmaceuticals for years and I think most drug dosages are high because they wanted to get through the FDA for efficacy. There are a lot of drugs we could be on and the dosage could be cut in half. At any rate, I can’t go back on a PARP inhibitor now until my iron is back up and I recover from mypreventativemastectomy, but I won’t be at 12 months without PARP until December 2025. and I too have read that it comes back 12 months after no PARP inhibitor. I would like to see some articles specifically geared towards long-term maintenance doses of PARP inhibitors, but I don’t know that such studies have been done.
in a quandary as well and terrified of getting cancer again.
It went ok, except they found my iron so low they ordered 2 iron transfusion, had first one, next is this Friday.
So no going back on PARP anytime soon.
The low iron (and hgb of 8.8) are probably from bone marrow depression from PARP (which I stopped in Dec to get ready for surgery), and Prevenation Mastectomy surg on Feb 20th. Who knows....
anyway recovering (slowly) but.... when my blood counts are good again (hopefully soon) I think going on a low maintence dose of PARP would be good.
Hi,
I too believe a low maintenance dose of PARP could be helpful. My experience with PARP has been dose way too high (needed transfusions) so they lowered me to 1 pill in am and 1 in pm (forgot if 150 or 100mg), anyway tolerated that well. But my MCV was super high (107) , so UVA doc thought I was pre leukemic, I went to Mt Sinai NY hemotologist for 2nd opinion and they disagreed, so I continued. I personally would worry less about MDS than return of OC. I'll be keeping on a super low dose of PARP as soon as my blood recovers from surg (preventative mastectomy, I'm BRCA2+).
Do you have a doc supporting your decision to continue PARP and prescribing? If so that is great.
@marlieenewman You have a question in your latest post from 7 hours ago:
"Do you have a doc supporting your decision to continue PARP and prescribing? If so that is great."
It's not evidence who you are addressing your post to. If it is me, I am not prescribed PARP.
It's great that you did seek out another opinion at Mt Sinai although I can see their recommendations were different than your oncologist. Is that correct?
I'm going to tag another one of our Mentors, Lori, @loribmt because you mention that your UVA doctor thought you maight be pre-leukemic. Lori's expertise is in this area and she may be able to provide you with more information than I can at this point.
Thank you so much, I will wait to hear from Lori. appreciate your recommendation!