Hello, I started taking Niraparib 2 weeks ago and was feeling very hopeful about this drug. My oncologist called this morning to tell me to stop taking it as a new study
(Nova I believe is the name) just came out saying it did not prolong survival in people without the gene mutation. I will get more information about this when I see my doctor on June 9th. I was just shocked to get this news and trying to make sense of it all. I don't think there are any other options for me right now. Feeling very scared.
Has anyone heard about this?
hope2022
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I’ve been looking on-line trying to find this NEW update for Niraparib but can’t find anything.
Hi; I was wondering if you’ve rec’d any new information from OCC clinical staff regarding this new study update on Niraparib?
@hope2022 I feel for your anxiety. It's always the worst when your doctor gives you options. I guess all I can tell you is the approach I take when faced with a decision like the one you will have to make.
Since we know the data is premature and therefore it may be more effective than the current data is showing I would hate to come off it and then find out that preliminary finding was wrong and now the window to take the drug again was closed to me. So given the option to stop or continue with no strong push either way from your doctor, I'd look at risks first....if the findings said nothing about any danger in taking the drug and it's only the efficacy in question then am I safe to continue. Then I'd look at side effects that I'm experiencing....are they tolerable or manageable. And finally what are the options if i stop taking the Zejula now? Are there other options to consider to avoid recurrence OR if we find the drug does perform as intended, can I go back on it at that point in time. Those are the things I'd be thinking about myself so perhaps they could inform your conversation in July. Does that help a bit?
If you get any updates I am eager to know more. @Fearless - Vol Mod Do you know if there are any other providers or experts I can contact in Ontario (GTA) to get more information or support just speaking to someone to have some clarity? Much appreciated.
All the best to you and your Mom. I will update if I hear anything. The parp is certainly something to consider if your mom has a recurrence. Hopefully she won't need it. Take care
I will talk with my doctor tomorrow to get her insight into this rise, but i kind of feel like I already know. The first indication of a recurrence in 2020 was the ca 125 going up by 6. Sorry, I am just babbling on. I can' t imagine having chemo again, when I just finished end of March. Feeling so disappointed right now.