Nirapari

[JingJingLove]

Hi dear everyone, does anyone have nirapari for maintenance treatment? I am both Brad and HRD negative. My Onc recommended Nirapari for maintenance treatment. I read some report of the trial, Nirapari doesn’t really work on both negative group people. Is there anyone who are both negative having nirapari for treatment? Does it work? What side effect should I expect? Thank you for any replies. Thank you 🙏

[Beatyourself]

Hi !

I am also BRACA negative and got Niraparib as a maintenance treatment. It worked only 10 months for me and then my cancer became active again. I suffered from constipation and elevated heart rate & blood pressure. Otherwise it was ok !

Hope it will work out for you !

Best wishes ! 🍀

[JingJingLove in reply to Beatyourself]

Thank you very much for your reply. Hope you can beat it! Wish you best of luck and all the best!

[K95m]

Hi

I’ve been on Niraparib for over 6 years and remain NED.

Side effects initially were awful :

High BP

Liver enzymes very high

Fatigue

Sun sensitivity

A 2 week break and then restarted on a lower dose (200mgs)

Everything settled down although I never feel 100% well.

It’s doing it’s job though !

Good luck

Kay

[JingJingLove in reply to K95m]

Thank you very much for your reply! Are you HRD positive?

[LovemyJackRussell in reply to K95m]

This is so good to hear, 6 years NED must be wonderful! I've been on 200g since May and I have the sun sensitivity and slightly raised blood pressure, but they are really the only side effects. I occasionally lie awake (usually if I have had to get up to empty my stoma bag) and I try not to let demon thoughts creep in, and I read until my eyes are drooping again.

200g seems to be the go to dose now - do you know what dose you will be on, JingJingLove?

[JingJingLove in reply to LovemyJackRussell]

Thank you for sharing your experience. The professor would like me to start with 200mg. But she also said I don’t have to take this, coz I am both Brac and HRD negative , will not be beneficial from this very much. May I pls ask What is your HRD status? Xxx

[LovemyJackRussell in reply to JingJingLove]

I'm definitely brca negative, but there was not enough viable tissue at my debulking for them to test for HRD, but they felt that I would 'probably' be negative for this, too. They said that Niraparib has had good outcomes for BRCA/HRD negative. I'm hoping that they are correct!!

[K95m]

I have no idea tbh. I’m BRCA negative though

[JingJingLove in reply to K95m]

Thank you for your reply

[JingJingLove in reply to K95m]

You are doing so well! Many congratulations!