Niraparib "long term", anecdotal side-effects?

[pretzel8]

Hi folks, asking this as a relative:

So Niraparib has relatively newly been given to non Brca, non Hrd OCs as maintenance. Its quite hard to find data about taking it more than 2 years for example. Does anyone know if there are listed toxicities attributed to longer use? The pharma company must have some data on this? But do others have any anecdotal side effects?

Thanks and best wishes

Pretzel8

[BrandyHorse]

thanks for raising this. My daughter is on this drug for three years so would also be interested in any information. She is alteady suffering high dystolic blood pressure after a month.

[Newbery3]

As far as I'm aware you are just monitored and if you are well you can stay on but it's your choice, I'm on it abd hope to stay on as long as possible as I'm ned and stage 4b . There's a lynparza Facebook group and there a lynparza graduate face book group and I find loads of tips and stories on there. Hope this helps x

[Softyskin]

One of the biggest concerns for long term use is the potential to develop AML and also the body can become resistant to the effects on any cancer cells. That is my understanding anyway, I've been on it 9 months. High BP joint pains and tendonitis, insomnia (intermittent), brain fog, fatigue being the main effects on me now. After 2 months it had sent my haemoglobin and red cell count way low so needed 2 transfusions....I recovered but it still attacks the red cells....but not so bad as last time 😊

[SopSinger]

My understanding is that long term effects are not toxic, but that it loses efficacy. (I stand to be corrected.)

[Kaitlinsmum]

I took Niraparib for almost 3 years. I became gluten intolerant and reliant on laxatives. However, I'm still glad that I took it as I'm certain the cancer would have come back quicker without it.Good luck

[Kaitlinsmum]

I took Niraparib for almost 3 years. I became gluten intolerant and reliant on laxatives. However, I'm still glad that I took it as I'm certain the cancer would have come back quicker without it.Good luck

[Pianoplayer731021]

Hi, I was on Niraparib for three years ( lowest dose) but still suffered from side effects with taking breaks from it once in awhile. Low hemoglobin which required a few blood transfusions, many UTIs, and I had low ferritin levels. I had a 4 hour iron infusion. This drug is given if you are non BRCA too., which I was. My red and white cell counts were on the low side also. I am still NED , which is wonderful, but I am happy that I am off niraparib now. There can always be a trade off when using different drugs. Keeps cancer cells at bay, but it can affect the blood in different ways. Your Dr. will probably monitor you and decide what is your best option to keep you healthy. Sending my best wishes, xx