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Ovarian carcinoma: 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 Recently I've learned that Zejula has been withdrawn by GKS for patients after II or III line of treatments and with positive HDR (which is ma case) as ineffective.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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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 7, 2023
In reply to @janets23 "I was on Zejula for 3 years, 200 milligrams (I had the Rad50 gene mutation) Stage..." + (show)
@janets23

I was on Zejula for 3 years, 200 milligrams (I had the Rad50 gene mutation) Stage 3 ovarian(responded well to chemo) n now was told to stop taking it Zejula immediately due to the FDA n that it caused 10% death rate……my original Dr. who placed me on it has since retired n now my new one( that took over her place) will do a CT scan in Jan at the months end, so in the meantime, I insisted to have the CA-125 blood test taken for the next 3 months until I see Dr in Feb after my CT just for piece of mine….
Well, I took my first ca test n I was at 8.8 last month(Nov) 2023 n now my result was 13 in(Dec) 2023, a month of being off it n 13 is still normal n that is what I was at before I started Zejula 3 yrs ago Dec. I have had no side effects…
Has anyone else had same results after being off of it?

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@janets23, are you currently taken another maintenance treatment?

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1 reply
bendeb | @bendeb | Dec 7, 2023

I stopped after 3 years. My oncologist left the area. I’m seeing my new oncologist in late Jan.
I’ll ask her if she has any ideas on another maintenance therapy.

REPLY
janets23 | @janets23 | Dec 8, 2023
In reply to @colleenyoung "@janets23, are you currently taken another maintenance treatment?" + (show)
@colleenyoung

@janets23, are you currently taken another maintenance treatment?

Jump to this post

No, nothing at this point….

All blood tests have been in the normal range where they should be n ca-125 has been 7-9 range for the 3 years I was on it…….

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crispin | @crispin | Dec 11, 2023

Would like to continue Zejula after the 2 year mark (BRACA Mutation- Brip1); however, my oncologist refuses. She tells me that the risk of earlier death would be greater. The ovarian Association disagrees and tells me there is new research that it keeps helping. Can anyone weight in? Shouldn't it be my choice?

REPLY
1 reply
jbickler | @jbickler | Dec 12, 2023
In reply to @crispin "Would like to continue Zejula after the 2 year mark (BRACA Mutation- Brip1); however, my oncologist..." + (show)
@crispin

Would like to continue Zejula after the 2 year mark (BRACA Mutation- Brip1); however, my oncologist refuses. She tells me that the risk of earlier death would be greater. The ovarian Association disagrees and tells me there is new research that it keeps helping. Can anyone weight in? Shouldn't it be my choice?

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Hi Crispin, my oncologist and oncologist surgeon has said the same. I was told after the 2 yr period I must stop and more research has shown that the med can effect your bone marrow possibly getting bone marrow cancer. I was told by my Dr that there other treatments they can offer me if I have a recurrence which I gave not had any recurrence for almost 2 years. We will talk more when I see my oncologist in early January and we’ll go from there but if I have any problems before that appt we will meet sooner. So in the meantime I’m not going to give up Hope and keep my faith…❤️🙏🏻

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