Blood disorder with Niraparib

[K95m]

Has anyone developed myelodysplasia due to long term Niraparib and if so what was your treatment? I have Nucleated red blood cells and a high MCV and have been referred to a Haemotologist for a bone marrow biopsy.

Any info would be greatly appreciated

Kay

[Caleda4]

Hi, I am sorry to hear that this could be a problem. Out of curiosity, How high are your red blood cells and mcv. I am on Rubraca my red blood cells are raised,my mcv only one point higher than recommended level.I do remember my Ocologist telling me there is a risk regarding myolodysplasia and I signed a form to that effect.

I hope that you will be ok.

[K95m in reply to Caleda4]

Hi Caleda4

My RBC are low actually at 3.5, my MCV is over 100 . I’m seeing a Haematologist specialising in MDS on the 11th so I guess I will find out more then. It is a recognised side effect but is relatively rare. I’ve been on Niraparib for 3 and a half years !!

[organicinna in reply to K95m]

Hello dear. Wow 3,5 years on Niraparib ! Am only 3 month on it yet )) But my doctor said its up to 2 years one can take it maximum 3 because of possible blood problem. How did you feel on it, any side effects? Mine is got better after they reduced it to 200? but 300 was too bad on me when I started. May be I was panicking too early but i could not sleep so they agree to reduce it but she said 100 would be pointless its very small dose. Now I can sleep well but body is aching morning ? day and evening , mostly back and sides and after 5-6 pm am tired like been training for marathon )) Sorry am not answering your question though ))

[K95m in reply to organicinna]

Hi Yes some side effects, fatigue, insomnia.

[Pianoplayer731021 in reply to organicinna]

Hi, I have been taking 100 mgs. for 18 months now and I have been doing ok. I will have a scan in January, so fingers crossed again that it will be good. So far, my cancer hasn’t returned after chemos and debulking surgery. I was stage 3/4. Niraparib 100 mgs. They look at your weight also when they decide on the dose. I started on 200 mgs., but it was too strong for me. Donna

[organicinna in reply to Pianoplayer731021]

Oh i envy you on 100mg )) Yeah may be its OK for you frame Am quite tall and weight is 80 kg that why probably my oncologist 100mg be useless to low , and am 3/4 too

[Caleda4 in reply to K95m]

Hi, Thank you for letting me know the above info.I wish you luck with the Haematologist on the 11th.

Do let us know how you get on.

[delia2]

I don’t have experience with this but do know there are a number of levels of MDS indicating risk and severity so it would be good to find that out once you get tested. The treatment would vary depending on risk level. I hope yours is low risk! Keep us posted.

[K95m in reply to delia2]

HiYes I will post when I know more

Thanks