niraparib

[Curry55]

I am on the drug niraparib ovianian cancer I want to come off it I need to know has anyone done this and been ok

[Jax68]

I had niraparib for two years. Only came off when my cancer recurred.

[Gerontious]

Hi Curry55, why do you want to come off it, are you suffering bad side effects?

[Curry55 in reply to Gerontious]

iI feel they are destroying me

[JustKBO in reply to Curry55]

Hi there. I am similar to you inasmuch as I’d like to come off but I’m scared to so I will stay on them as long as I can. They appear to have worked really well for me but I’d like to give my liver a break. If you feel like they’re killing your body I’m not sure that they are worth taking. I really believe we have to work with our drugs to get a positive outcome. Anxiety is not good for you. Talk to your team and ask their advice. Good luck.

[OvacomeSupport Partner My Ovacome Team in reply to Curry55]

Dear Curry55, I'm sorry to hear that you are experiencing bad side effects from niraparib. It is really important to let your clinical team know about this. Have you had the opportunity to call your Clinical Nurse Specialist to let them know? We would not advise stopping or altering the dosage of your medication without speaking to your clinical team first. You can also call your GP or NHS 111, who will be able to advise further. If you have concerns that the side effects could be related to a medical emergency, we would advise attending A&E without delay.

Best wishes,

Alice - Ovacome Support

[Gerontious in reply to Curry55]

So sorry to hear that. I'm also taking naraparib and apart from insomnia and constipation I'm coping g quite well. As other people have said, talk to your oncology team. I wish you well.

[Cascabel]

I had been on Niraparib during 3 years, only had problems at the begining with my platelets and my Oncologst decreased the dosis at 200mg. During trestment I had omeprazole daily to protec stomach.Also I was very much sensitive with the sun and need a hat when wheaher was sunny.

[delia2]

Hi. Your oncologist may be willing to reduce the dose and/or give you drugs to help with side effects. I was on Olaparib for three years and wouldn’t be here now (albeit on treatment) without it. I was on 2/3 dose for a year and a half dose for two years. It’s also possible to have a two week break to recover.

[Dales-Rambler]

Hello Curry55

I was on Rucaparib for approx 18 months, but my kidney function reduced over time, thought to be attributed to the drug (but not proved). In consultation with and approved by my clinical team, I've now been off it for 2 years. The kidney function didn't improve (but it has now stabilised) but neither has the cancer returned, and I'm hoping it stays that way. 🤞

Regards

Sally

[Pianoplayer731021]

Hi , I was on Niraparib for three years 100mgs. with some breaks off and on due to bloods crashing and many UTIs. They still don’t see any cancer coming back yet, so that is good. The only thing I have after stopping, I still suffer from bladder infections. It’s not pleasant having these and I wonder if all of these cancer treatments have affected my immune system. I am having 6 month check ups now and I will have one in April. Fingers crossed for a well exam 🤞 Hope you are doing well! xx Donna I have been ned for over 5 years now.

[Jax68]

I asked my team to reduce it coz I was so tired. It was better after that and I got two years in remission