niraparib

[BrandyHorse]

Hi everyone. I have sought your wonderful advices before so I hope you can help me again.

My daughter is having trouble tolerating niraparib. Her haemoglobin is very low. She has had one blood transfusion (2 units) four weeks ago and halved her Niraparib from 200 to 100. Her bloods are still showing low haemoglobin and she is having to have another blood transfusion. She has a scan next week and a consultation with her consultant in two weeks. Has anyone had the same issue and will her blood settle or will she need to take a different medication. Thank you xxccccc

[Doglover1410]

hi, when I had to have a blood transfusion I had to have 4 weeks off Niraparib (I managed to convince them to 3!) has your daughter had a break to recover? I was then reduced to 200 and was ok again after a break.

I hope she picks up soon x

[BrandyHorse in reply to Doglover1410]

Thank you. We are expecting her to be offered a break. It’s interesting you negotiated the amount of weeks taken off. Wishing you all the very best. Take care xxxx

[Doglover1410 in reply to BrandyHorse]

My oncologist was on leave so I got one of his team who obviously weren’t as strong as him!! xx

[Pianoplayer731021]

Hi, I had low hemoglobin with niraparib. My dose was reduced from 200 mgs. to 100 mgs. I had two blood transfusions at different times. I had UTIs also once in awhile even on the lower dose. I had to take some breaks off and on. I had transfusions on the lower dose. I was on Niraparib for three years. I developed low iron ( anemia) from being on this drug. I had an iron infusion and I have my blood checked once in awhile for this. Hope things work out well for your daughter. xx

[BrandyHorse in reply to Pianoplayer731021]

Thank you. It is good to see you are still doing well even after all you have gone through. It’s good to know that you can take a few breaks. Has your haemoglobin settled now? It’s still early days for us. Wishing you all the very best. Take care. Xxxxx

[Pianoplayer731021 in reply to BrandyHorse]

Hi again, my hemoglobin has settled. They just need to watch my red cell and white cell count also. Sending well wishes xx

[Pianoplayer731021 in reply to Pianoplayer731021]

I also want to tell you that I have been NED for 4 1/2 years now, so those few breaks that I had didn’t seem to affect my CA 125.

[Softyskin]

Hi there, I was on 300mg and after nearly 3 months my haemoglobin tanked at 64 and I had 2 transfusions a week apart and a 3 week break and a reduction to 200mg, and now I'm healthily back in range. It just takes time for the body to acclimatise to the drug sometimes. Wishing your daughter well xx

[BrandyHorse in reply to Softyskin]

Thank you so much. That’s very reassuring. I am hoping that is what will be needed. Take care and all the very best. Xx

[Realistic]

Wish your daughter a speedy recovery. Love & hugs

Sheilaf xxx

[BrandyHorse in reply to Realistic]

Thank you so much. It’s the helplessness I feel in not being able to put a plaster on her and kiss her better xxxxx

[BrandyHorse]

thank you for all your helpful comments. My daughter now tells me that her Consultant won’t give her a break because Niraparib dies not respond well to a break. After seeing all your comments about taking a break I don’t think that is right. How do I get a second opinion please and which Trusts are giving a break? We live in Kent.

[Realistic in reply to BrandyHorse]

I would say ask your GP but it must be an oncologist more knowledge on our situation l paid first consultation because l was told even though l had an high raise in my CA125 To come back in 6 months but my instincts kicked in so saw wonderful Oncologist he sent me for a pet scan which showed my ovarian cancer. Thank god l didn't wait any longer by the way only paid for the consultation l wasnt insured l already have a managed brain tumour so the premiums are crazy but it put me on the right path. I always say on here be proactive in your care. Xxx SheilaFxxx

[Realistic in reply to Realistic]

I didnt mean your gp being an oncologist he referred me sorry about thatxxx

[Sherrym]

I have coped well for years on oliparib-maybe they can change her over. I think it may be more tolerable as I feel pretty normal on it & bloods ok. Good luck

[Sherrym]

just to add that Professor Ledermann in Harley Street advised me, tho it’s about £150 . He will talk on Zoom with you -money v well spent

[BrandyHorse in reply to Sherrym]

Thanks Sherrym. Can we still stay in the NHS if we seek a private consultation?

[Sherrym]

yes, as far as I know, 2nd opinions are very valued