Niraparib side effects - low platelets

[GillyN]

Hi. I am very well and fit following my surgery, then 2nd line chemo after a recurrence in Feb this year. I was SO pleased to be offered Niraparib and started on 3 tablets 3 weeks ago.

Unfortunately my platelets dropped after 2 weeks, and I had to stop taking the tabs for a week. Annoyingly my platelet count today has worsened so it's another week without taking the tabs. Has anyone else experienced this and if so how long did it take before platelets stabilised? Thanks. Also does anyone know of a specific support group/help line for Niraparib? As its so new, the local nurses know very little as I am the first to receive this! X Gilly X

[Hidden]

There is a face book group for Parp inhibitors. Take a look at the way the dosage can be adjusted and according to the drug company Tasaro lower dosage is as effective- from their drug trials. Used in USA for over a year

[Lindaura in reply to Hidden]

I have heard this also. They are still not sure if the dosage, so they can lower it. Talk to your CNS nurse.

Ask about this and if there are either transfusions available or medications such a neulasta to help with blood issues.

Best of luck, Laura

[GillyN in reply to Lindaura]

Many thanks for the info. X

[GillyN in reply to Hidden]

Thanks. Will take a look on FB.

[Hidden]

I found papaya leaf tea helpful in keeping my platelets up

[GillyN in reply to Hidden]

Thanks. Will give it a go. Best wishes. X

[Angie1412]

Hi Gilly i have experienced the same as you. My platelets went lower after my second bloodtest but they were back to normal after the third and i was able to go back on the tablets but reducing them to two. So far so good. Only problem i am having is swollen ankles. Not sure whether this is a side effect but will mention it when i go back at the end of October. Hope your platelets improve soon. Take care. Angie

[GillyN in reply to Angie1412]

Thank you. Yes hoping they'll go back and can continue with lowere dose. Seems strange that they start you on a high dose, as its reported that a low dose is just as effective.!.? Seems back o front to me

[Maxjor]

Like Mac27, I am drinking papaya leaf tea at least once or twice a day plus it is suggested you get the "drops" which is papaya leaf extract (don't love the taste but...) and my platelets seem to be going down and up between blood tests but staying at an acceptable level so far. Cannot unconditionally say it is from the tea, but I read about it from others on PARPs who said it worked for them so why not try!

news-medical.net/health/Pap...

I am on Lynparza but one of its known side effects is platelets going down.

Wishing you luck getting it up so you can start back on the PARP xoxoxoxo

[GillyN in reply to Maxjor]

Thank you. Will give it a try. X

[1032]

Blood cells dropping is the big side effect. I started on 600 mg day, blood dropped si given a blood transfusion and went to 450mg day. My blood cells still drop! Seeing oncologist on Monday and will see if another blood transfusion needed and what CA 125 is. I don’t want to go off this drug as I’d done all the chemo.

[JanL100]

Hi Gilly

Yes this also happened to me. The nurse specialist told me that the platelets normally drop in the third week and mine did. It took two weeks off Niraparib before they rose to an acceptable reading. When I started taking the Niraparib again the dose was reduced to two a day instead of three and the platelets have been ok since. Hope this helps.