I hope I'm not repeating myself and not sure if I've posted this here before. Sorry if it's a repeat, I'm a bit tired lately doing a lot of cancer care reading.
So, my mom is BRCA-negative and has the option to start Niraparib. Wondering if anyone has had good experience with this and if it's still working for you? I hear it's more effective for those with the BRCA gene. Also, is there anything on the horizon for non-BRCA gene ladies?
Thank you, best to all.
Hi Luci22, I have been on Niraparib since July of 2020. I had to take a few breaks of skipping it for a week to build my blood counts again. Other than that, I have been doing ok. My dr. might take me off after the two year mark, but I don’t know for sure. I am stage 4 and am BRCA negative. My CT scans have looked well, so niraparib is working well if I have microscopic cells left after chemos and debulking surgery. Hope things go well for your mom. Donna U.S. x
Thank you for responding to my question. It's yet another decision and wish there were more concrete answers for the non-BRCA ladies. Not as fair that there isn't as much of a concentrated effort to get a more certain PARP for this group. So glad though that this IS working for you! All the best to you.
hi Luci, I am also negative and I declined taking Zejula(Naraparib) because the list of side effects scared me to death !! I also didn't understand that if I took it and I did get a recurrence at some point, how would they know if it was the drug that helped me stay clear until the recurrence since I never had a recurrence so what did they have to base that answer on??I still wonder about that BUT........I finally gave in and started the Zejula 7 months after finishing up chemo because my Oncologist really suggested it was best for me to do so. I have been taking 2 pills daily...for almost 2 years now. My labs have been great and so far, no side effects ever happened. I have no idea if the drug has kept me NED so far or if it would have turned out this way even if I never took it! I suppose every one handles medicines differently so hopefully everything goes well with your mom with whatever she decides to do. I would suggest taking 200 mg daily and not 3mg..because I have read many posts from women who say that 300 mg was too much and caused them problems.
The dilemma you had is exactly what we are thinking! Without the BRCA gene, it's harder to know if Niraparib is the cause of NED or if that would have happened naturally. We don't want to add a greater load to her body but if it does help then we absolutely want it for her. Very good to read that you're doing well with NED! Thanks for responding.
Hi again Luci, I started on 200 mgs., but my dr. reduced my dose to 100 mgs. after having unpleasant side effects. I believe they dose you according to your weight, however a reduced dose is better if it agrees with you. I have been fine on the 100 mgs. Yes, I wonder also if I would be in remission without this parp. The dr. wanted me to try this even without the positive BRCA gene. So far, it has been working good. Hope all goes well with your mom. Donna xx
I still am puzzled as to why they want you to take a Parp if you haven't had your first remission. I did a lot of reading about the parp drugs and my understanding was that you need to have a first remission and then go on it and see how long you can go before another remission, if you get one and then they would at least know if it was the right thing to take and how much extra time was because of the drug.When you are first diagnosed you are so scared and you do what your doctor says. I have asked why Zejula is taken before a first remission but they skirted the answer. Next time I go for my "checkup" I will ask again how they know if the Parp that I am taking is actually keeping me NED . I often think I should quit it because long term of taking anything can cause problems down the line but... then that scaredness and fear rolls around and you just submit to what they say thinking that they know best . One can only hope that OV wont return ever, even though they claim that 80% of women get recurrences!!
Hi Heidels, my dr. wanted me to start within 6 weeks or so. My understanding is that they might take me off this niraparib after I completed 2 years. This will be in July of this year. Maybe I can be in remission without taking any drugs for however long my cancer doesn’t return. That is what I hope for, just have to wait and see. I was NED after debulking surgery and after last chemo round. I don’t know for sure if the parp helped being NED or if I would n’t have tried it at all. That is always the question, but I am happy that my scans are still looking good. Donna U.S.
My scans have been great too and my labs are usually all normal range. Not sure how long they will keep me on Zejula, but wont a bit of fear come about if they want it stopped after 2 years? Dont know if that parp did anything at all but if it did, and they take you off it, I think I would worry more every couple months when it was lab and scan time. I seldom think about my OVC until it nears lab and scan time !!
I feel the same way when it is time for blood and scans. Thanks for replying and take care, Donna
It's all very confusing to me how some doctors put patients on an inhibitor and some don't. I have asked my gyne/onc if I should be on one, and he said no. I am BRCA negative also and have been in remission for 4 years. It scares me because my insurance won't cover maintenance scans, so I haven't had one in over a year. Insurance said I have to have symptoms. So ridiculous. My only marker has been my CA125 taken when I get my port flushed. It has remained normal. Feels sometimes like I'm waiting for the other shoe to drop!
I keep wondering where is the advancement of treatment for non-BRCA mutated genes? There's a lot of excitement about PARPs but the general public doesn't realize it's mostly aimed at a certain group even though it has worked for some without the gene. It would help to have more data to show who else benefits from it so women can make a better decision on whether to take it or not .
Are there any updates on those of you taking a PARP? How is it coming along? My mom is still trying to decide, it's her last week to make a choice - doctor said sooner than later to decide this.
Thing is, if you take it before ever having a recurrence, how does anyone know if that is what kept cancer from returning? Maybe it does, maybe it doesn't. I have been taking Zejula for almost 2 years now. i haven't been bothered by taking it, no side effects. Labs good. Scans good. Your mom has to do what she feels she MUST do for her own peace of mind.
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