Niraparib

[Bettyxxx]

Hi everyone

I just wanted peoples honest opinions.

I have been on Niraparib for 12 weeks and found it very tough headaches breathlessness palpitations fatique a bit but not severe, low mood and anxiety and i have started biting my nails which I havnt done for years. Sleep ok after first few weeks. I felt like i was running at 70%. Dog walking has been difficult as the palpitations make me feel awful even going upstairs. I used to do several miles a day. Bloods all fine and i am on lowest dose 100mg due to side effects. I went to see my oncologist a week ago and told her how i am feeling and she suggested trying 2 week break which i am half way through. After 24 hours i felt so much better and now feel amazing full of energy and all side effects settled well 90%. I realise now i was prob running at 50%. Now the hard bit.... do i go back on them and take the side effects or enjoy the quality of life (but greater risk of recurrence) and stay off them? Its so hard as we are so lucky to have access to parps and i know most people are fine x just wondered if anyone else had this problem,

Cheers

Diane

[WorriedHusband]

Ask for another parp inhibitor ?

[Bettyxxx in reply to WorriedHusband]

Hi there, I understand niraparib is the only one available to me at the moment, but i will certainly ask the question

Diane

[Katiebairdie]

Hello Diane

Your symptoms mirror mine. I started on 200mg. Very breathless and like you had to cut my dog walking from about 3 miles per day to half that. Mainly because I couldn’t walk up hills, flat ground seems O.K. Couldn’t sleep, a little anxious and my memory was awful and lastly constipation.

I took a break for 2 weeks and then onto 100mg for a couple of weeks. My bloods were good so back up to 200mg. After about six weeks I’m feeling much better but still breathless and constipated. However CA125 had raised a lot.

I see doc in two weeks time and will be interested to see blood test results. If my CA125 has raised again I will probably have to decide if I should stop Niraparib and go back to Chemo. Horrible choice!!

Have to keep smiling.

Kathy

[Bettyxxx in reply to Katiebairdie]

Hi Kathy

Thanks for your reply because sometimes i think its just me! Most people seem to tollerate them well i think we must just be unlucky x i had few side effects to chemo both times so i have been very lucky i know x. Its so hard to deal with this disease x. So sorry your numbers are raising again are you on them after a recurrence?

All the best

Diane

Xx

[Katiebairdie in reply to Bettyxxx]

I have had two recurrences so really hoping this works, if not I’ll ask for more chemo I expect. I always felt rotten for about three days after chemo so it’s tolerable. Wait and see game.

Kathy x

[greenpink in reply to Katiebairdie]

What about a CT scan. You could have rising CA125, but no disease progression showing on a scan. I'm on Olaparib and this is happenening to me

[Lindaura]

That’s a terrible drag!

I have heard that Olaparib does not have so many side effects, but they don’t offer it on the NHS except in trials.

I am just in the beginning of treatment for my first recurrence, but I plan to lobby my Onc next week to put me forward for this trial.

I don’t know what you should do, but carrying on with such a poor quality of life doesn’t seem right.

So I agree with everyone else.

Try to get a different PARP, if your scores are good, CA-125 way down, etc.

Good luck with this,

Laura

[Bettyxxx in reply to Lindaura]

Thanks laura i think most people are fine on niraparib its just my body protesting 😂 i tried for a trial back in may but didnt meet the criteria and that trial finished in june. good luck on your journey i finished my second lot of chemo in may hope you stay well xxx

Diane

[greenpink in reply to Lindaura]

I'm on cycle 12 of Olaparib, started January 2018, NHS funded. It was licenced by NICE a while ago, am BRACA +. Do you mean Olaparib is only given in trial for Braca- women?

[Lindaura in reply to greenpink]

My Onc here said I would have Niraparib, and I thought that was the only PARP available on the NHS.

The original trial, using only Olaparib (from 2013) is still on throughout the world and in about 18 locations in Britain.

So I am going to lobby for it tomorrow at my Inc appointment for when my current treatment is over and successful.

Thanks,

Laura

[marylondon]

I am wondering if you could try 100 mg again after having this break and see if you get the same symptoms. I feel for you as it’s so important to have a good quality of life. I presume your Ca 125 level is ok .💐

[Bettyxxx in reply to marylondon]

Hi there

Thanks for your reply, I think thats a good idea, and an option if i decide to re try them maybe the break will have helped xx

Have you tried them? If so how did you tollerate them

Thanks

Diane

[marylondon]

Yes I started Niraparib 4 weeks ago . I ve had anxiety which feels different from the usual worrying ,& a degree of high blood pressure - especially when done at the Hospital! It’s better at home but they have said I ll have to stop the Niraparib if it rises further. Also recently I’ve been getting abdominal pain ; which I see is another side-effect !! It’s different from the abdo pain I had when I re- occurred . So this Niraparib isn’t a piece of cake ! But worth persisting with for awhile . Perhaps certain symptoms come & then go ! 😀

[Bettyxxx]

Yes i think the symptoms do get better mine were better after the initial 8 weeks because at first I couldn’t do anything the headaches and insomnia settled. I hope you continue to improve xxx