niraparib - tolerability and side effects

Hi,

Hi Oldest daughter 

I'm on a PARP inhibitor - rucaparib though. Niraparib is an amazing drug for those who can tolerate it but not everyone manages. Quite a few people I know through personal contacts and a Facebook group for people on PARP inhibitors have had severe nausea and fatigue on niraparib. Some people find the side effects get less over time - that's the general pattern with this class of drugs. Some have found that the side effects are just too much and they have to discontinue. Some find that they can tolerate a lower dose. The experience from trials show it's better to start at a high dose and reduce as necessary rather than the other way round. 

I've been on Rucaparib since November 2016. I had severe fatigue to start with and reduced my dose. That made life much better. All the tumours in my lungs and pelvic lymph nodes shrank and by April all were halved in size and some no longer visible under CT scan. My CA125 fell from 580 at the start to 23. Since May my CA125 has been creeping up but a scan in August showed tumours shrunk further and in October the disease was stable. I have ongoimy fatigue and nausea (managed with anti emetics). I've had a couple of weeklong treatment breaks (one of advantages of taking tablets versus IV chemo) and that's been helpful. 

I can't pretend it's been a walk in the park but I'm very grateful for this last year. I'm in a better position now than I was a year ago and how many people with metastatic incurable cancer can say that? 

I hope your mum responds well. The first few weeks may well be rough, so be prepared to tough it out and keep a diary of side effects.

Xxx

Hello 

I have just started (last Thursday ) taking niraparib after two relapses of my stage three c ovarian cancer diagnosed in 2016.

I have read the information regarding side effects and wonder if they occur very soon after treatment starts or build up. The reason I am asking is that so far I have had no probems at all but realise it’s early days yet. I know that as it is a relatively new drug other users may not be able to give me the benefit of their experience. Despite the side effects warnings I feel that it gives me hope of more time without relapse. 

Hoping to hear of other patients experiences.

Hello I have been taking naraparib on and off since September. Initially my blood pressure rocketed as did my pulse. Plus I was experiencing anxiety. Unfortunately due to the newness of this tablet the temporary consultant and specialist nurse neither seemed to have come across anyone with the side effects I was experiencing. I came off  it then was put on it again, finally they decided to send me to get blood pressure treatment from my GP. She put me on betablockers for a fortnight . I have been on naraparib for three weeks straight now and all is good .