I was diagnosed with Primary peritoneal cancer in May 2024, I had12 rounds of chemotherapy before being able to have the debulking surgery which I had in Leeds, this was successful and I was told there was no visible signs of cancer left. Shortly after this I was started on Niraparib which I took for two months I thought this was going well with minimal side effects apart from fatigue and a little shortness of breath, at the 2 month mark I got increasingly short of breath so much that I was sent to hospital to check if I had a blood clot or no, after numerous checks chest X-ray & CT scan they said I had pneumonitis inflammation on my lungs, I started a 6 weeks course of steroids (I’m on my 5 week) these have made me feel terrible, I have been told that I can no longer take Niraparib and it seems there is only one option left for me and that is to try Rucaparib.
The side effects look terrible for this drug, has anyone any experience of this drug, do I try this or just give up and see how I go? My bloods are good and my current CA125 is18 , and this has been stable since Dec 2024.
Any information would be helpful, I go back to see the consultant after I finish the steroids I just seem to go from one thing to another with no quality of life, I keep trying to be positive and I know there are people suffering a lot worse but there doesn’t seem to be much help in deciding which way to go on this and I don’t want to damage my body anymore than all the treatment has already done.
Hi Love Hols
It sounds like you've had a lot to deal with and I can understand you wanting to hear about other people's experience with Rucaparib.
Although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I've searched the group looking for other posts which mention Rucaparib and found this one for you to have a look at. Although the original post is 3 years old, there have been more recent responses so you could always reply to the thread.
Wishing you all the best with whatever you decide to do.
Anne
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