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 Recently I've learned that Zejula has been withdrawn by GKS for patients after II or III line of treatments and with positive HDR (which is ma case) as ineffective.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?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

<p>I was on Zejula for 3 yrs after chemo for stage 2/3 ovarian cancer. My Dr said I should stop because it can cause blood cancer. Has anyone stayed on past 3 years?</p>

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@bendeb

<p>I was on Zejula for 3 yrs after chemo for stage 2/3 ovarian cancer. My Dr said I should stop because it can cause blood cancer. Has anyone stayed on past 3 years?</p>

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@bendeb, according to Zejula's website:
"ZEJULA may cause serious side effects, including "bone marrow problems called Myelodysplastic Syndrome (MDS) or a type of blood cancer called Acute Myeloid Leukemia (AML). Some people who have ovarian cancer and who have received previous treatment with chemotherapy or certain other medicines for their cancer have developed MDS or AML during treatment with ZEJULA." https://zejula.com/side-effects/#:~:text=Bone%20marrow%20problems%20called%20Myelodysplastic,AML%20during%20treatment%20with%20ZEJULA.

I believe members like @dorota52 @riteofscot @jbickler @sallyr have experience with Zejula (niraparib) as maintenance therapy and may have been on it for longer than 3 years.

Has your doctor noticed changes that put you at higher risk for developing a blood cancer? What treatment alternative is being suggested for you?

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@colleenyoung

@bendeb, according to Zejula's website:
"ZEJULA may cause serious side effects, including "bone marrow problems called Myelodysplastic Syndrome (MDS) or a type of blood cancer called Acute Myeloid Leukemia (AML). Some people who have ovarian cancer and who have received previous treatment with chemotherapy or certain other medicines for their cancer have developed MDS or AML during treatment with ZEJULA." https://zejula.com/side-effects/#:~:text=Bone%20marrow%20problems%20called%20Myelodysplastic,AML%20during%20treatment%20with%20ZEJULA.

I believe members like @dorota52 @riteofscot @jbickler @sallyr have experience with Zejula (niraparib) as maintenance therapy and may have been on it for longer than 3 years.

Has your doctor noticed changes that put you at higher risk for developing a blood cancer? What treatment alternative is being suggested for you?

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My doctor from MA was adamant that I stop after 3 Yrs.
The Dr who prescribed it, has left the practice. I have not been prescribed anything to replace it.

REPLY
@colleenyoung

@bendeb, according to Zejula's website:
"ZEJULA may cause serious side effects, including "bone marrow problems called Myelodysplastic Syndrome (MDS) or a type of blood cancer called Acute Myeloid Leukemia (AML). Some people who have ovarian cancer and who have received previous treatment with chemotherapy or certain other medicines for their cancer have developed MDS or AML during treatment with ZEJULA." https://zejula.com/side-effects/#:~:text=Bone%20marrow%20problems%20called%20Myelodysplastic,AML%20during%20treatment%20with%20ZEJULA.

I believe members like @dorota52 @riteofscot @jbickler @sallyr have experience with Zejula (niraparib) as maintenance therapy and may have been on it for longer than 3 years.

Has your doctor noticed changes that put you at higher risk for developing a blood cancer? What treatment alternative is being suggested for you?

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JoAnn Bickler, I will be on Zejula 2 years this January 2024 and my oncologist is stopping it for that reason…
Thx!!

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@jbickler

JoAnn Bickler, I will be on Zejula 2 years this January 2024 and my oncologist is stopping it for that reason…
Thx!!

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What are some of the other maintenance treatments Mayo Clinic us suggesting for their patient to start after Zejula? Just wondering my oncologist and I will talk at my next appt which is in January…

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@jbickler

What are some of the other maintenance treatments Mayo Clinic us suggesting for their patient to start after Zejula? Just wondering my oncologist and I will talk at my next appt which is in January…

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@jbickler, you might wish to review this related discussion to see what other women are doing for maintenance therapy of ovarian cancer as you prepare for your appointment in January
– Ovarian Cancer: Should I go on Maintenance Therapy? https://connect.mayoclinic.org/discussion/maintenance-therapy/

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@colleenyoung

@jbickler, you might wish to review this related discussion to see what other women are doing for maintenance therapy of ovarian cancer as you prepare for your appointment in January
– Ovarian Cancer: Should I go on Maintenance Therapy? https://connect.mayoclinic.org/discussion/maintenance-therapy/

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Hi I’ll be going off Zejula in 1/24 after being on it for 2 years. What have others done after the 2 years for maintenance treatment. I have had no recurrence since my initial diagnosis, chemo, surgery and then finish my chemo. What have others been doing once you go off your first round of maintenance therapy finishing with Zejula ? Thx!

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Yes. This is the million dollar question. I went off Zejula because one of my oncologists was adamant that I go off after 3 yrs due to the blood cancer warnings. At the same time, the oncologist who put me on
Zejula, moved and there is no one to renew the prescription, since that practice has closed due to its parent companies failure.
I have a new oncologist but will not see her until Jan.
I didn’t have a problem with 100mg Zejula 1x day.

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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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Going to have a CT next week. I’ve been off Zejula since Oct. I see new oncologist in January. I’m planning on asking if there’s anything else for maintenance.

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