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.

@starko

Sorry to hear about lynparza not working. I started on it Yesterday after a spike of CA125 and HE4,S, 1.5 years after chemo ended.

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starko: by how much did your CA125 and HE4.S spoke? stparker

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I think my CA125 went to 147 and I’ll have to ask about HE4. Either they don’t do that test or it’s called something else.

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To Stparker54... CA125=34; HE4,S=158

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@starko

To Stparker54... CA125=34; HE4,S=158

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Starko: your CA125 level still looks good. I don't know enough about HE4,S to say what's normal or not stparker54

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@stparker54

Starko: your CA125 level still looks good. I don't know enough about HE4,S to say what's normal or not stparker54

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Standards are CA125<=30; HE4, S<=140. I am over the standard readings, but more important is the fact that they both have been rising for the past 4 consecutive tumor markers. It is the beginning of a spread.

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starko: I am sorry to hear this. Have you taken CT-Scans to confirm this?stparker54

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@stparker54

starko: I am sorry to hear this. Have you taken CT-Scans to confirm this?stparker54

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Stparker54: yes, I did a CT scan about 6 weeks ago and it was all clear, but my oncologist says it is too soon to tell. I am going to Mayo, AZ in November to have a PET/Ct scan, etc.

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My name is Janet and I have stage III ovarian cancer. Just had my 1st 3 month follow up after completing 6 chemo treatments. My CA125 has risen from 12 to 64 in 3 months. CT shows new small lymph node. My Gyn/OC team is discussing which maintenance therapy I should try.
Avastin, Lynparza or Zejula. Can anyone give me any advice?

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@janet4290

My name is Janet and I have stage III ovarian cancer. Just had my 1st 3 month follow up after completing 6 chemo treatments. My CA125 has risen from 12 to 64 in 3 months. CT shows new small lymph node. My Gyn/OC team is discussing which maintenance therapy I should try.
Avastin, Lynparza or Zejula. Can anyone give me any advice?

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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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@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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