Nariparib

Hi

I don't have any experience with nariparib but I noticed that your post hadn't had any response yet.

I tried a search for nariparib, both in this group and on the Macmillan main site, but nothing came up. Is the drug perhaps known by a different name?

x

 Its been approved but not yet out for all as yet  i do know it could be called another name but im unsure as to what

Its a 3 year mainenance.  I dont know why im so worried about it if its keeping me clear   maybe because i thought the chemo was it and if i got through that then all would be fine

It's natural to be worried about being put on a new drug , especially one that you've heard causes lots of side effects. However, don't forget that not everyone gets side effects and, even if you do, your team will be monitoring you closely.

Could you give your CNS a call and talk through your worries with her? 

x

im in clinic today so im a bit busy   they say to bring along questions   i cant think of many more   ican ask

Iv had so much going on in a year its crazy   im amazed im still standing but i am and thats what matters

I think through ebrything i jave held myself so tight so no one would worry as we all had enough to worry about and i was an added extra we didint need and now iv let go  i feel sooo tired now

If you're in clinic today wouldn't this be an ideal time to ask? Although you say you're busy I'm sure the nurses would be able to spend a few minutes reassuring you. 

Don't worry about being told to bring questions with you and you're not sure what else you can ask, just ask about what's worrying you, ie the side effects of this new drug.

I think it's natural when having cancer treatment to concentrate so much on holding everything together and concentrating on getting through the treatment that we don't realise how tiring that can be. Sometimes the drugs we're given can cause what's known as fatigue. Clicking on the link I've created will take you to Macmillan's information on this which also gives ways of managing it.

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thank you for your help today

No problem

All the best with your treatment

x

I have been on this drug for just over 2 months now. The only side effect I had/have is that its affecting my platelets. My oncologist lowered my dose, and so far so good.

I know other women who are on this and all seem to be doing ok.

Hope this helps

Hi, only just seen your post. I've been on Niraparib since 24/12/19. The only side effect I've had is that they make my blood pressure a bit high, so I'm taking Amlodopine along side which seem to work well. 

The best thing is that I get my blood checked and speak to my oncologist every 4 weeks, which keeps me confident that if anything should reoccur they'll catch it quickly.

Hope all goes well for you xxx

Ann xx

Morning Ann

i had to come off it after 5 days I hadn’t slept in 3

to go on to olaperib n see if it helps. Blood pressure now higher than when I started and won’t go down.   I’ll get there trial and error

im going this one works well

pamela