Anyone on Niraparib?

More disappointing news today, my CA125 has doubled in the last two weeks. I am currently taking Niraparib and worried sick that it is not working. My registrar said today that its early days and it doesn't mean that Niraparib is not working, but she is concerned. I am doing well on the drug with 0 side effects. In fact I feel better and have more energy than I have had for the last 18months. I am not due a scan until July so she has suggested continuing to take Niraparib and we will review in 4 weeks time, with a possibility of an earlier scan if needed. I have taken Niraparib for 5 weeks 2 x 100g,

Am I expecting too much too soon?

Did your CA125 keep rising, then start to come down?

Many Thanks

Lyn x

[Hidden]

I’m on week eight and my CA125 continues to rise during the first 4 weeks. My oncologist decided not to take my CA125 any more and just go on symptoms so he could give Niraparib a good crack.

I see him next Tuesday (by phone now) but nothing much has changed in the last four weeks. I thought that recurrence was in progress at our last meeting but symptoms have calmed down, that or Covid-19 has taken my mind of things.

See how you get on, maybe give it a little longer.

Lisa x

[Hidden in reply to Hidden]

Thank you Lisa - I like the idea of no CA125 it really does stress me out every time it goes up, now 508 😪 fingers crossed that you are not in recurrence. Stay safe x

[Kaitlinsmum in reply to Hidden]

Hello. I am on my third week of Niraparib. I'm lucky because most recent scan was clear- after 2 surgeries and 6 chemotherapy sessions. However I am still scared of recurrence. I'm interested in what symptoms you were experiencing. I, like most of us ,have had everything removed so I wouldnt expect the same pain that alerted me to the problem. Do you mind describing your symptoms? Totally understand if Im being too nosey. X

[Doglover1410]

Mine went up 1st week but then came down and is between 8-13 now. I’ve done bloods today so await the results. I don’t get a scan unless symptomatic or it goes up? I wouldn’t stress for now, your onc seems on it x

[Hidden in reply to Doglover1410]

Thank you, My CA 125 is currently 508 so hard to not be worried - feeling a bit calmer today, hoping Niraparib will start to work soon.

[Kkaren]

My levels were horrendous when I was first diagnosed. Following chemo I then became obsessed with numbers which was having a negative impact on me. Eventually I had a conversation with the onc and told her I didn’t want to know the ins and outs just what the plan was. My husband on the other hand likes to know the numbers so each time I see her he has time with her on his own discussing things.

[twofortheroad68]

Hello, I was on Niraparib for only one month but was taken off as it didn't work and my CA125 went from 185 to 585. I am back on a chemo drug, Caelyx, but I actually forgot to ask about the CA125 at the last blood test. Don't get disheartened, everyone's cancer is different and the treatment is tailored to your own specific needs and so really there isn't much point in comparing.