NIRAPARIB PARP INHIBITOR

[Rlenesue]

Hi ladies! I finally started the zejula (niraparib) parp inhibitor last night! My cancer has come back with CA125 at 977. My oncologist feels very strongly that the parp will work for me. However, she said I would be on it for 4-5 months only. I'm not understanding this as it's supposed to be a cancer maintenance drug for braca positive cancer patients. May I ask how long any of you wonderful women have been on this parp and maybe lend insight as to why my doctor said I would only be on it for months rather than years?

[Lindaura]

You are right.

That makes no sense.

I am BRCA1 positive also and when I finish my current Carbo/Caelyx regimen, I am planning to go on a PARP inhibitor forever!

Hopefully, it will work ...

I guess you need to clarify this. Possibly they are planning to switch you to a different one?

Fingers crossed,

Laura

[Rlenesue in reply to Lindaura]

Yes, Linda. I was thinking the same thing. Maybe a different parp is in my doctor's thought process.

[Mptelesca]

Hi, Rlenesue! Did you have a CATScan? I was told that if CA goes up but SCAN is clear then they put you on the Zejula. I am BRCA negative and they put me on the Zejula in September, 3 months after last chemo. It was my first recurrence. I was told that it would be for maintenance. My CA was 16 at the time, but, clear SCAN. I guess everyone's numbers are different. They blasted me with Chemo when my CA was only 22, but, they saw something on Scan.

With all the recent approvals of different meds/PARPS/Immunology, etc. I am sure they will put you on the perfect combination. Wishing you the very best. My only recommendation is to stay ahead of the constipation. Swallow colace or smooth move tea whenever you can. I am proof than you can't overdose on the stuff. Best of luck!

XOX

Marisa

[Rlenesue in reply to Mptelesca]

Thanks, Marisa for that sound advice. You apparently run low on CA125. I'm at 977 and my pet scan showed the cancer is back. I knew it was as soon as I got my numbers. Your numbers are within normal range between 0-35 so I guess they wanted you on the parp as your disease shows up early. Good luck.

[Numi]

Hi. I'm BRCA2, and I've been on Niraparib since October 2017, and it's working well for me - CA125 steady at around 20, and recent CT scan showing nothing to worry about. Chemo for recurrence in early 2017 brought it down to 50 from 200, which qualified me for the drug. I will be on the drug for as long as it keeps working, which I hope will be a very long time. The patient notes on the drug say to keep on taking it as long as it works, so I too cannot understand why your oncologist has put a time limit - I'd ask why. All the best x

[Rlenesue in reply to Numi]

Hi Numi! Just wanted to comment on you're numbers a. That's fantastic. So happy for you..

Xxxooo Rlene (pronounced arlene)

[Rlenesue]

Thank you, Numi. That's what I thought. Perhaps my oncologist meant it would take 4-5 months to bring my ca125 down. I will definitely confer with my doctor regarding how long I can be on it. It doesn't make sense to go off it as the cancer comes back without it.

You definitely made my day. I see my doctor on Wednesday and talk to her. Xxxooo r lene

[Numi in reply to Rlenesue]

Just wondering how you got on when you saw your oncologist?

[Rlenesue in reply to Numi]

Hey Numi... my oncologist said I can be on it indefinitely if it works for me. I believe she meant it would take 4 months to see how I was faring with the Parp.