Hi everyone New to the forum was diagonised with stage 1c3 clear cell mixed ovarian cancer had surgery november 2021 and finished chemo June 22 been on niraparib now for 9 months I was just wondering how long other members have been on it and wat happens when niraparib is stopped.
Any advice would be appreciated hope you ladies feeling well.
Hi BallyMacfan, I'm 1C3 clear cell but wasn't given the option of niraparib by my hospital in Leeds. Are you able to say what your clear cell is mixed with & where you're being treated? Your CNS may be able to give you an idea of the expected treatment length x
Hi. I’m not in the same situation as you, having had Olaparib after recurrence for high grade serous, but in general you take the PARP for two or three years and then you have routine surveillance, usually checkups every three months. I also have scans every six months because CA125 is not a marker for me.
Hi and welcome to this forum. I have been on 100 mgs. of niraparib for three years in July of this year. I have had some times when I had to take a break for a week or so because of side effects. I am not sure, but I believe my dr. wants to stop it this summer. I have been NED and was diagnosed in September 2019 with stage 3c or 4a HGCO. Sending my best wishes, Donna xx
Hi I was 1C2/3 clear cell diagnosed Sept 2021 as well Surgery chemo no niraparib You are first person I have heard of getting Niraparib at that stage of clear cell Maybe it was for the 'mixed part of the diagnosis ?
Hi everyone, I was diagonised with stage 1c3 clear cell after surgery but they wasn't very happy with the biopsy cos I always had a high ca125 660 it's now 7 most ladies with clear cell the ca125 isn't always a good marker so off it went to a mdt and another biopsy was ordered I was suppose to be starting chemo in January I dint start it till 6 weeks later waiting for those results was dreadful and all over Xmas as well finally the result came back as stage 1c3 clear cell mixed with high grade serous carcinoma .I will ask nurse next time how long on it.wen I first started taking niraparib it gave me insomnia but seems to settle down now I still get achy muscle it comes and goes hope I haven't rambled on too much.This is a wonderful site to be on cos I don't know anyone else with ovarian cancer .
Thank you for getting back to me will keep you postedx
Hello, I took Niraparib for almost 3 years. Then it stopped working sadly and a tumour appeared. But I have read on here about ladies taking it for much longer. I would recommend making the most of this time Niraparib is giving you. Wish I had started earlier on my bucket list!Wishing you good health and happiness x
Claire
Hi kaitlinsmum thank you for letting me know about how long you was on niraparib that's so good sorry to hear its not working anymore hopefully your team will have a plan in action.Stay strong and remember how many people care about you sending hugsxjayne
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