1. < Gynecologic Cancers

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.

Carrie | @katycot | Oct 8 3:28pm

I continued Avastin for a full year. My blood pressure was well controlled during this time and I think I could have continued safely, but the pharmacy felt the benefits would not out way the risks at that point. The major risk I believe was a recurrence requiring surgery, which we were anticipating due to some PET activity that’s been under watch. I think the longer off, the better healing I would have for another abdominal surgery. Since going off about 10 months ago, I have had a small increase in activity on the PET, but nothing significant enough to warrant treatment. I think it’s been an excellent choice to use it, although I was not certain I should at the time. Best of luck to you sis.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 8 2:33pm
In reply to @charlotte12 "I just finished my 6 chemo treatments, my oncologist suggested maintenance treatment of one year with..." + (show)
@charlotte12

I just finished my 6 chemo treatments, my oncologist suggested maintenance treatment of one year with avastin, every 3 weeks, my CT scan and CA125 all showed no evidence of disease, I developed high blood pressure during
Chemo treatment which included avastin and control it with 2 blood pressure medicine. the oncologist also suggested it is up to me if I want maintenance treatment - how was your plan
and did you take avastin? Maybe you can share your experience?

Jump to this post

Good questions, @charlotte12. I'm tagging @katycot to make sure she sees your questions to her.

REPLY
charlotte12 | @charlotte12 | Oct 7 5:41pm
In reply to @katycot "I have had avastin with my chemo which just finished. I have experienced high blood pressure,..." + (show)
@katycot

I have had avastin with my chemo which just finished. I have experienced high blood pressure, recurrent headaches and now have learned I have extremely high lipids which were never a problem before. Now chemo is finished and I believe the plan is to continue avastin, and will know the plan after scans are done in a couple of weeks.

I have reservations on doing this due to the side effects I have suffered already and don’t know if there is any true benefit or need. There was nothing in my genetic study to hitch onto for assurance doing it would be beneficial and what I have read seems to indicate IF there is benefit it would be only months.

It’s very difficult to know what to ask and what decisions should be made.

Jump to this post

I just finished my 6 chemo treatments, my oncologist suggested maintenance treatment of one year with avastin, every 3 weeks, my CT scan and CA125 all showed no evidence of disease, I developed high blood pressure during
Chemo treatment which included avastin and control it with 2 blood pressure medicine. the oncologist also suggested it is up to me if I want maintenance treatment - how was your plan
and did you take avastin? Maybe you can share your experience?

REPLY
1 reply
jbickler | @jbickler | Jan 15 5:12pm

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!🙏🏻

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 15 5:06pm

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

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jm | @jodimj | Jan 9 10:44am
In reply to @jbickler "The maintenance medication I am taking is Zejula 100mg daily…" + (show)
@jbickler

The maintenance medication I am taking is Zejula 100mg daily…

Jump to this post

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

REPLY
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!

REPLY
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)
@jodimj

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

Jump to this post

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.

REPLY
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)
@katycot

I have had avastin with my chemo which just finished. I have experienced high blood pressure, recurrent headaches and now have learned I have extremely high lipids which were never a problem before. Now chemo is finished and I believe the plan is to continue avastin, and will know the plan after scans are done in a couple of weeks.

I have reservations on doing this due to the side effects I have suffered already and don’t know if there is any true benefit or need. There was nothing in my genetic study to hitch onto for assurance doing it would be beneficial and what I have read seems to indicate IF there is benefit it would be only months.

It’s very difficult to know what to ask and what decisions should be made.

Jump to this post

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

REPLY
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