Ovarian Cancer: Should I go on Maintenance Therapy?

Posted by dianainstaug @dianainstaug, Oct 7, 2020

Hello
My name is Diana and I was diagnosed with Stage 3B ovarian cancer in April. Just finished my last chemo treatment two weeks ago. I need to decide if I want to go on a maintenance drug (Neraparid) or not. I am BRCA neg, but am HRD positive and have a high LOH score. From what I could decipher from the trial done with this drug, it looks like I could on avg only add 10 months of progression free survival. I am still dealing with the neuropathy side effect in my feet from chemo. I can't imagine starting a new drug now, even if it is not as potent as my chemo drugs. I also really don't want to be feeling sick and tired for a year or two, if I have those side effects. I have been on medical leave but have to return to work in a few weeks at an elementary school. Possible side effects and monthly blood draws, just seems like a challenge when working full time. My question to the group is if there is anyone who has chosen not to go on a maintenance drug. How are you doing? Is there anyone who has gone on the maintenance drug but wishes they had not? I really want to give my body a chance to heal from chemo. and I really am trying to make healthy lifestyle choices (diet, exercise, sleep, emotional support, etc.) in hopes to support my bodies own healing abilities. I am thrilled Mayo offers integrative health support and have been taking advantage of all that is offered!

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

jbickler | @jbickler | Jan 15, 2024

I did very well on Zejula, been on it for it’s about 2 yrs. I’ve started on 300mg but due to my low WBC my Dr dropped me down to 100mg and I’ve done pretty well. My only concern is my joint sometimes hurt quite a bit but nothing ibuprofen wouldn’t help. Not sure his long I’ll be on this medication in my future and my oncologist and I will be discussing that soon.
I wish you luck!🙏🏻

Colleen Young, Connect Director | @colleenyoung | Jan 15, 2024

@jbickler, it looks like your message to @jodimj was interrupted. I think you were going to share more about your experience with Jejula?

jm | @jodimj | Jan 9, 2024

Yes… please! Lol

jm | @jodimj | Jan 9, 2024

In reply to @jbickler "The maintenance medication I am taking is Zejula 100mg daily…" + (show)

What has your experience been with this @jbickler, this is on the table for me as well. Has it been worth it and what are the side effects? Don’t hold back, older and feeling put through it. Really want to know all i can. Is there anyone who skipped maintenance? Thanks, jm

jm | @jodimj | Dec 30, 2023

Thanx for that! I have a few vascular issues myself so Avastin wasn’t a part of the plan front line. He’s mentioned using it again, bit concerned. Glad the stroke hasn’t affected you too much, and I appreciate your great attitude towards this. Just a couple days after last treatment, a little kicked here, and trying to decide who, what, where, when and ifs. Lol
Thanks again and Happy New years!

Carrie | @katycot | Dec 30, 2023

In reply to @jodimj "What did you do? What was your experience , I share your concerns of yester year." + (show)

Hey sister. I continued to use Avastin for maintenance until end of November, basically 20 months total. In August I had a PET showing the beginnings of a recurrence, but it has not worsened since then.

We stopped Avastin until my next scans in January. I had seen neurology for some other issues from chemo that hadn’t cleared up and in the process they did an MRI and noticed two ischemic strokes had occurred. We don’t know when those happened, probably back when I first had the super high BP and headaches, but for safety we stopped it in case it was more recent. If I had it to do all over again from the start, I would still go that route.

I wish you the best of luck in your battle.

jm | @jodimj | Dec 30, 2023

In reply to @katycot "I have had avastin with my chemo which just finished. I have experienced high blood pressure,..." + (show)

What did you do? What was your experience , I share your concerns of yester year.

dorota52 | @dorota52 | Dec 5, 2022

In reply to @jbickler "Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both..." + (show)

Hi there.
Have you started Zejula after the first line of treatment?

egins1208 | @egins1208 | Nov 20, 2022

In reply to @colleenyoung "Welcome @egins1208, I'm sorry to hear that Zejula (niraparib) was not a good option for you...." + (show)

Thanks for the contact. On that chemo combo I have experienced constipation and diarrhea; I have also had fevers that come and go. Fatigue, joint aches and hair loss I expected, but the fevers were really upsetting.

Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022

In reply to @egins1208 "I tried a neraparid drug after completing chemotherapy and had to stop it within 10 days..." + (show)

Welcome @egins1208, I'm sorry to hear that Zejula (niraparib) was not a good option for you. Thank goodness the low platelet count was discovered.

I know you're not looking forward to the unwanted side effects of returning to carboplatin and pacitaxel, but I'm glad that is an option for you. Members like @pauldale4 @pbprice @susu2 may be able to share their experiences of Carbo/Taxol for maintenance therapy for ovarian cancer and managing side effects.

Egins, what side effects did you find the most challenging the first time you were on Carbo/Taxol?