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

Posted by dorota52 @dorota52, Dec 4, 2022

Hi, I'me new on this group. I have HGSOV diagnosed in november 2019. Since then, exept from 11 months in remission after debulking surgery and first line of standard chemo (carbo+taxol), I'm on constant meds (3 rounds of chemo – Carbo, taxol, Caelyx, Avastin) and now I've started the maintenance therapy with Zejula (Niraparib). Recently I've learned that Zejula has been withdrawn by GKS for patients after II or III line of treatments and with positive HDR (which is ma case) as ineffective. I live in Europe – Switzerland and I wonder if I should continue with Niraparib (which here is still allowed) or not?

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@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

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@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?

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@colleenyoung

@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?

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"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.

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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!

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

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@egins1208

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

Jump to this post

Hello @egibbens. I was able to find a discussion on this same topic so you will notice I have moved your post here:
– Ovarian carcinoma (HGSOV): Continue with Zejula (Niraparib) or not?: https://connect.mayoclinic.org/discussion/oc-zejulaniraparib/

I did this so you may more easily connect with members already discussing this same thing. Have you stopped taking Zejula and are you now taking something else?

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