Ovarian carcinoma: Continue with Zejula (Niraparib) or not?

Quality vs Quantity?
I started Zejula 300mg back in August stayed on for approx 4 weeks. Due to extreme RA in right hip, oncologist took me off 2 weeks prior to surgery. Ortho surgeon wanted me to trsume Zejula 2 days after hip replacement. Taking Zejula throws
my platelet and blood levels extremely off, still not fully recovered from chemo. This makes me very tired and body aches with Zejula. I am not sure if taking Zejula is worth it if you cannot fumction at a decemt level of living
Any advise?

@dorota52
We are not medical professionals here at Mayo Clinic Connect. We do provide our members with support, share our own experiences, and provide suggestions on where to get questions answered.

I personally have not experienced High-grade serous ovarian carcinoma (HGSOV) and did not have meds for the cancer I did experience (endometrial adenocarcinoma). From your post it sounds like the past few years since your initial diagnosis have been difficult with the constant medications. I'm thinking that you've already talked with your cancer care team about whether or not to continue with Niraparib. Is that correct? Is it possible for you to get another opinion in Switzerland? Are you interested in getting a consult with Mayo Clinic or a Mayo affiliated clinic in Europe? Here is the information for that:

Mayo Clinic Appointment Request
-- http://mayocl.in/1mtmR63

International Services at Mayo Clinic
-- https://www.mayoclinic.org/departments-centers/international/locations

@dorota52, that is a very good question to discuss with your oncologist.

Other members like @jbickler @egins1208 @janet4290 also have experience with Zejula (niraparib) as maintenance therapy and have posted in this related discussion.
– Ovarian Cancer: Should I go on Maintenance Therapy? https://connect.mayoclinic.org/discussion/maintenance-therapy/

@tammykl recently started on a clinical trial with immunotherapy and niraparib. Fellow members may be able to share if their treatment protocols have changes with the recent announcements of multiple drug companies to withdraw their respective PARP inhibitors for heavily pretreated ovarian cancer patients.

Here's a copy of the letter that GSK provided to health providers:
https://medinfo.gsk.com/5f95dbd7-245e-4e65-9f36-1a99e28e5bba/57e2a3fa-7b9b-432f-a220-5976a509b534/57e2a3fa-7b9b-432f-a220-5976a509b534_viewable_rendition__v.pdf

It's important to note that the change affects only "treatment of adult patients with advanced ovarian, fallopian tube, or primary peritoneal cancer who have been treated with 3 or more prior chemotherapy regimens and whose cancer is associated with homologous recombination deficiency (HRD) positive status."

"This change does not apply to any other ZEJULA indications including the following for which the USPI remains unchanged:
- for the maintenance treatment of adult patients with advanced epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in a complete or partial response to first-line platinum-based chemotherapy.
- for the maintenance treatment of adult patients with recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in a complete or partial response to platinum-based chemotherapy."

GSK recommends that oncologists discuss options with patients who have already started this protocol.
@dorota52, it sounds like the choice to continue with niraparib is based on the individual and your risk vs benefit. Will you have the opportunity to discuss this with your oncologist soon? How long have you been on niraparib?

"Will you have the opportunity to discuss this with your oncologist soon? How long have you been on niraparib?"

Yes, of course. I have the appointment with my dr on 12 of December. Hovewer, my oncologist doesn't seem to be updated concernig GSK decision for the USA patients. She is confident that I should take it. Therefore, I've asked for a second opinion in the University Hospital in Lausanne (awaiting for appt) . I started Niraparib a week ago. So far no side effects.

Good morning @riteofscot, you pose a tough question that many of us facing cancer treatments have to consider. Quality vs Quantity of life when it comes to continuing with our protocol.

From my understanding, Zujela is a medication used for maintenance after someone has gone through Platinum Chemo Therapy for advanced ovarian cancer and has responded partially or completely to the treatment.

So you’ve already been through the wringer with this cancer, chemo and then immediately having hip surgery! That’s a lot to take in and recover from! This new drug, targeted to your specific cancer cells is also kicking your biscuits and you feel lousy. I read the drug’s side effects and unfortunately impact on blood counts is pretty common.

When I was undergoing treatments for Acute Myeloid Leukemia, I also had to take a targeted drug between chemo rounds to help control the possible return of my cancer cells until the next round. I was also tired and felt like I couldn’t function. However, it paid off! It helped keep those specific cancer cells from spreading and allowed me to go on to my next phase of treatment. 3.5 years later and I’m still here and in a durable remission.

How well did you respond to your chemotherapy and how long ago was that?
Did you have repeated rounds of chemo? I’m only asking because, if this drug is working along with your chemo and you can hold out a little longer, it might be worth the misery to continue ‘just a little more’…

Have you talked these concerns over with your doctor? Have you been given a timeline for how long you’re to continue Zejula?

I've been on zejula for 2 years, maintenance after first line carbo/taxol., No evidence of disease. I just read the notice that was referenced and it appears they've decided it is less than useful to give a Parp inhibitor to somebody who is not in remission Or at least stable. So it's been removed from the use of active treatment. However 1) the study was not on our drug, but on similar drugs.
2) It has not been removed for "maintenance", for anyone.
I'm in a different situation first for not having much treatment so far (stage 2B), second I am HR proficient and this is the only game in town for me for maintenance.
My experience as far as tolerating it is that I have had almost no lifestyle affecting side effects. My platelets and neutrophils crashed after about a month, which didn't surprise me since I only weighed 105 lb at the time. They gave me a break to recover and cut back the dose as I had expected they would need to do and it's been pretty smooth since then. And your body does adjust as time goes on.
By now you have probably made all your decisions and gotten this information from somewhere else. But anyway, all good luck to you!

Are there women using pills after six rounds of chemotherapy? I had bad reaction to Zejula. Are there other pills that are working well?

Hello @egibbens.
Have you stopped taking Zejula and are you now taking something else?

I’ve been told that using a naparib maintenance drug may cause blood cancer., if on it for more than 3 years. However, I have been using successfully for 3 years and have had no side effects. Wondering if anyone has any experience using longer than 3 years.

@bendeb, does your team monitor for potential blood changes?