Has anyone tried Zejula as a maintenance drug? Side effects?

Zejula (niraparib) is a PARP inhibitor commonly used as maintenance therapy for ovarian cancer, and many people in this community have experience with it. Side effects can vary from person to person, but connecting with others who have been on this medication can provide valuable insights into what to expect and how to manage any challenges that might come up. Hopefully some community members will share their experiences to help guide your decision-making process with your care team.

Hello Jean I tried it last year. Main side effects for me were anemia and related low energy which i remedied thru diet, and adverse effect on my liver which ultimately led to discontinuation, plus it stopped working after about 8 months. Best wishes ~T~

Thanks, Toni

Hi Jean, I've been on zejula for 21 months. My blood count went down immediately and they lowered the dose to 100mg a day. The major side effect for me has been fatigue and shortness of breath when walking up hills. My CA 125 has been between 10-13 the whole time and my Natera blood test shows 0% evidence of cancer in my system. My only concern is whether to stop taking this at 2 year mark and risk recurrence or continue and risk getting leukemia. I'd be interested in hearing if anyone has thoughts on this situation. Good luck, Jean and all of you who live with ovarian cancer. Barbara

Thank you, Barbara. I decided to start on Zejula in mid June,when I return from vacation. After talking with my family and getting other opinions from physicians, they all recommended that I start to take the Zejula and if I have side effects that interfere with my quality of life, then stop it. I’m curious why you are thinking about stopping after 2 years? Is it because of the side effects, especially the risk of leukemia? That risk is something that I’m concerned about. - Jean

Hi Jean My oncologist is thinking that the research shows that it's better/safer to stop after two years. The research seems to say that statistically there is no added benefit after two years. She's open to having me stay on it, as my oncologists in Italy suggested when I started. I plan to get a second opinion. Good luck with your treatment. Barbara

Thank you for this information. I think I’ll talk to my oncologist about this. God bless us and help us to make these important decisions.

I was started on this drug and after a week and a half my platelets were down to 6 and I was immediately sent to the hospital where I stayed for 19 days. I had throat ulcers, low magnesium and potassium. I was given transfusions, platelets, magnesium, potassium, an EDG and poked and prodded more times than I could count. I ended up having to use a walker and could barely stand. I lost over 20 pounds because I couldn’t eat because of the throat ulcers. Of course, I was no longer able to use that drug. I’m now on what I understand to be less effective, but my body can tolerate it. It’s called mvasi (?) Good luck if you actually use this and I hope your body will tolerate it.