Looking for Zejula users
I just wanted to know if there were other ladies out there who are taking or going to be taking Zejula. Tagging @nadiaC from our recent discussion. I am high grade serous 3C, diagnosed Oct 2019. Will be starting Zejoula today. Reaching out for input and discussion regarding dosage, side effects, when, where and time frame.
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Twitch thanks
Laura
Yes, unless you're BRCA positive, Olaparib/Lynparsa is not available to you as a maintenance treatment. The great news is that Niraparib/Zejula has been approved and it does not require a BRCA positive result as one of the criteria. Leave it in the hands of your oncologist to determine if the drug applies to your particular situation. That's the first step. Then lean on your cancer center to help determine funding possibilities if the drug is appropriate for you following the end of your chemo.
I would also suggest you ask about trials on an ongoing basis if the Niraparib is not suitable for you. These come up fairly regularly and you want to ensure you are being considered for any that might be appropriate to your case. I can vouch for that given I've been on an Olaparib clinical trial almost two years now that, given I am not BRCA positive, I would not normally have qualified for. For me it was all timing...my recurrence and the launch of my particular trial.
Good luck with completing your treatment and do let us know the outcome of your investigation into the use of Niraparib moving forward.
Laura
@babs272 Far be it from me to suggest you do anything other than what you believe is right for you. But do think carefully about passing on the opportunity to try the Zejula. Yes, it appears to have side effects; for some patients worse than others. After all, PARP inhibitors are toxic, just like chemo. But side effects can often be easily managed with medications or changes in dose levels. Usually though there is a short window after chemo that a PARP can be started. If you miss that window then there's usually no turning back the clock. You can always start and if you don't like it stop it. Do make sure any decision you make is based on good, accurate information. When I started Olaparib two years ago I was concerned about introducing something else into my system and what that might mean. But I armed myself with the information I needed and felt secure that if I changed my mind I could stop any time. Yes, I had some nasty side effects the first month. Some regular Tylenol and a drop in dose stopped that and for two years, other than mild queasiness and keeping an eye on my red cell counts I had no problems. For me, it was a matter of either saying no and leaving recurrence to further chemo, or giving it a shot. If it worked and I could tolerate it, then wonderful. If I eventually stopped it and had to go back to chemo then I could at least know I'd given it a try. No regrets, no what ifs.
I'm sure you'll make the right decision for you. I know how daunting the thought of more possible side effects can be just as you come off chemo. We all want to be as far from anything toxic or disruptive as we can. So I totally understand your concerns.
I think my oncologist was waiting on genetic results
I am familiar with the 8 week time frame but am happy that I got the opportunity to try this
Had a CA125 just before starting which was 16
Just waiting on the CT results
I started Oct 28. At first no side affects . Currently slight nausea.Feeling somewhat fatigued now but I suspect that will resolve. The CT was after 2 weeks, probably due to scheduling restrictions.
I don’t know if there other options out there.
As I expected, as more and more of our community share their experiences with this drug...and really with any treatment....clearly everyone's response, while having some similarities, is also quite different. Your reaction to the max dose of Zejula doesn't surprise me. Varying levels of intensity of the side effects you mention appear to be fairly normal. And as with any drug, there will usually be side effects of some kind. As you said, a small price to pay if the side effects are largely tolerable. I'm glad to hear that lowering dose has helped.
As for other options, your oncologist will be keeping abreast of all new treatments available, either approved or trial. You can always ask about trials as an option but that would likely mean giving up the Zejula. Lynparsa, to my knowledge, right now is the only alternative that is designed for the same purpose as the Zejula. However, on top of criteria such as platinum sensitivity, Lynparsa is for BRCA positive patients.
Wishing you the best and hope you'll continue to share you experience with our group, as well as reach out if there is anything we do to help you.