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.

@colleenyoung

The availability and eligibility of cancer clinical trials can be a challenge to figure out. Mayo Clinic offers a service to help you find clinical trials that may be possible for you, your cancer and eligibility. Please contact Mayo Clinic Clinical Cancer Trials to talk to a research coordinator. Here's the info:

CANCER-RELATED CLINICAL STUDIES QUESTIONS
https://www.mayo.edu/research/clinical-trials
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

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Thank you so much for the information and I will reach out to the clinical trials research coordinator. I really do appreciate your help…

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@jbickler

Hi Colleen I’ve been looking around in Mayo clinic.org, just wondering if there’s are any new studies, medications anything new on the Recurrence of Ovarian Cancer?? Not sure where to go with this question??

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The availability and eligibility of cancer clinical trials can be a challenge to figure out. Mayo Clinic offers a service to help you find clinical trials that may be possible for you, your cancer and eligibility. Please contact Mayo Clinic Clinical Cancer Trials to talk to a research coordinator. Here's the info:

CANCER-RELATED CLINICAL STUDIES QUESTIONS
https://www.mayo.edu/research/clinical-trials
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

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@colleenyoung

Hi @jbickler, welcome. I moved your question about Zejula (niraparib) to this existing discussion where members like @janet4290 @starko @nae @pauldale4 are talking about maintenance therapy for ovarian cancer.

When will you start Zejula? How are you doing post treatment (surgery and chemo)?

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Hi Colleen I’ve been looking around in Mayo clinic.org, just wondering if there’s are any new studies, medications anything new on the Recurrence of Ovarian Cancer?? Not sure where to go with this question??

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I have been on Zejula for almost 1 year and so far so good… I do feel tired and in the beginning I did have headaches but they have subsided. It has been making my joints hurt but with Tylenol that helps. Unfortunately with anything that can help you comes with side effects. I am just trying to keep any recurrence from happening so I will be able to live my life…

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@jbickler

Thank You for adding me to this discussion and I am currently on Zejula but just wondering if there are any new studies of treatments for helping against recurrence of ovarian cancer? I just want to stay informed for my future…❤️🙏🏻

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Still wondering if there is any new information on recurrence of Ovarian cancer. Are there any new studies or medication that might be out there? Is anyone else on Zejula and how long have you been taking it, I’ve been on Zejula for also a year and so far so good…

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@jbickler

I have been on Zejula 100mg since 1/22. Had to stop a couple of times due to a low blood count but I’ve been on it recently for 3 months.
My chemo and my surgery went very well and since the surgery 10/25/22 I have been doing really well.

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Thank You for adding me to this discussion and I am currently on Zejula but just wondering if there are any new studies of treatments for helping against recurrence of ovarian cancer? I just want to stay informed for my future…❤️🙏🏻

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@colleenyoung

Hi @jbickler, welcome. I moved your question about Zejula (niraparib) to this existing discussion where members like @janet4290 @starko @nae @pauldale4 are talking about maintenance therapy for ovarian cancer.

When will you start Zejula? How are you doing post treatment (surgery and chemo)?

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I have been on Zejula 100mg since 1/22. Had to stop a couple of times due to a low blood count but I’ve been on it recently for 3 months.
My chemo and my surgery went very well and since the surgery 10/25/22 I have been doing really well.

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@jbickler

I’m am on Zejula for my ovarian cancer diagnosis since 1/22. I did have 6 chemo treatments and complete hysterectomy surgery and so far no recurrence. Is anyone on the Zejula and how has it been working for you?

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Hi @jbickler, welcome. I moved your question about Zejula (niraparib) to this existing discussion where members like @janet4290 @starko @nae @pauldale4 are talking about maintenance therapy for ovarian cancer.

When will you start Zejula? How are you doing post treatment (surgery and chemo)?

REPLY

I’m am on Zejula for my ovarian cancer diagnosis since 1/22. I did have 6 chemo treatments and complete hysterectomy surgery and so far no recurrence. Is anyone on the Zejula and how has it been working for you?

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@colleenyoung

Hi Janet, and welcome. You'll notice that I moved your question about choosing which maintenance therapy to take Zejula (niraparib) or Avastin (bevacizumab) or Lynparza (olaparib) to this existing discussion that @dianainstaug started.

- Ovarian Cancer: Should I go on Maintenance Therapy? https://connect.mayoclinic.org/discussion/maintenance-therapy/

I did this so you can click the link to read the previous posts and connect easily with fellow ovarian cancer thrivers like @pauldale4 @starko @susu2 @odette @tamcbart @heather2020 @azovercomer and more, who can share their experiences.

Janet, are in involved in the decision-making with the team, i.e., to give feedback on which side effects you feel more comfortable dealing with?

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Yes, the decision making team would like my input on which side effects I feel more comfortable with. My appointment with them will be this coming Monday, August 1st.

Thank you for sending the contacts of fellow ovarian cancer thrivers and also the link to discussions on maintenance therapy!

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