Ovarian Cancer: Should I go on Maintenance Therapy?

Posted by dianainstaug @dianainstaug, Oct 7 12:57pm

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!

Hi @dianainstaug, welcome to the Gyne Cancers group. I'm calling in fellow ovarian cancer members, like @dswiney @starko @rochellewisner @naturegirl5 @leannn @pauldale4 @odette @lilah @beccavrieze @marfish and @pbprice to join you in this discussion. Some are on maintenance therapy like Zejula (niraparib) or Avastin (bevacizumab ). Others are not.

Diana, Is it an option to delay maintenance therapy? Sounds like you need a break from side effects.

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Hi Colleen. Thank you for connecting me with others with OC. I have also thought of your suggestion to maybe delay making the decision for now. I don't see my doctor until the last Monday of the month anyways. I must trust I will be guided and led. I look forward to hear the stories of others. Thank you so much for inviting others to share!

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@colleenyoung

Hi @dianainstaug, welcome to the Gyne Cancers group. I'm calling in fellow ovarian cancer members, like @dswiney @starko @rochellewisner @naturegirl5 @leannn @pauldale4 @odette @lilah @beccavrieze @marfish and @pbprice to join you in this discussion. Some are on maintenance therapy like Zejula (niraparib) or Avastin (bevacizumab ). Others are not.

Diana, Is it an option to delay maintenance therapy? Sounds like you need a break from side effects.

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Sorry I haven’t been active on here for a while but wanted to give an update. Diagnosed 6/16/16, 3C high grade serous, been on non stop therapy since then, Carbo/Taxol, Carbo /Gemzar, zejula, Lynparza, clinical trial Herceptin and Perjeta, back to Carbo/Taxol/ with Avastin and Avastin only infusions every 3 weeks since April. Next week is number 17. First time in 4 years that I haven’t had a big jump in my CA125, it’s been consistently in the 30’s. It was 4600 when I was diagnosed. So I’m positive that it’s keeping my tumors from growing. So I highly recommend doing what your oncologist recommends. My side effects are manageable and I’m in no pain. Good luck and feel free to ask any questions.

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@dianainstaug

Hi Colleen. Thank you for connecting me with others with OC. I have also thought of your suggestion to maybe delay making the decision for now. I don't see my doctor until the last Monday of the month anyways. I must trust I will be guided and led. I look forward to hear the stories of others. Thank you so much for inviting others to share!

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Hi dianainstaug,
I finished my chemo about 1.5 years ago and was put on metformin by my Mayo oncologists. My CA125 and HE4,s have each been rising, albeit rather slowly, so I discontinued metformin and am awaiting Olaparib Felivery

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@starko

Hi dianainstaug,
I finished my chemo about 1.5 years ago and was put on metformin by my Mayo oncologists. My CA125 and HE4,s have each been rising, albeit rather slowly, so I discontinued metformin and am awaiting Olaparib Felivery

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Sorry, not finished! Apparently my insurance does not cover Olaparib. Beware! It costs a fortune. If this does not kill off the Remaining cancer I will return to chemo.

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@starko

Sorry, not finished! Apparently my insurance does not cover Olaparib. Beware! It costs a fortune. If this does not kill off the Remaining cancer I will return to chemo.

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Hi Starko
Thank you for sharing. I need to call my insurance, as well. I was on the drug manufacturer's website the other day and noticed a link for financial assistance. I learned some non-profit organizations also provide assistance. Did you check out any resources for helping to pay for the medication you need to take? I attended the OCRA (Ovarian Cancer Research Alliance) conference the other week and learned of another resource. It is called the Medicine Assistance Tool this was created for patients who need help with paying meds by the Pharmaceutical Research and Manufacturers of America (PhRMA) organization Their website is mat.org. They essentially are a clearinghouse advocacy group helping connect patients with resources. Hope this information might be useful for you.
Thanks again for your sharing!
Diana

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@pauldale4

Sorry I haven’t been active on here for a while but wanted to give an update. Diagnosed 6/16/16, 3C high grade serous, been on non stop therapy since then, Carbo/Taxol, Carbo /Gemzar, zejula, Lynparza, clinical trial Herceptin and Perjeta, back to Carbo/Taxol/ with Avastin and Avastin only infusions every 3 weeks since April. Next week is number 17. First time in 4 years that I haven’t had a big jump in my CA125, it’s been consistently in the 30’s. It was 4600 when I was diagnosed. So I’m positive that it’s keeping my tumors from growing. So I highly recommend doing what your oncologist recommends. My side effects are manageable and I’m in no pain. Good luck and feel free to ask any questions.

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HI Dale
Thank you so much for sharing! What exactly were your side effects when you were on Zejula? That is the drug I am looking at. I work at a school and have been on medical leave since my surgery. I am looking to return to work in a few weeks and am concerned about being on a drug that may weaken my immune system. You have been on so many meds, Dale! I wonder if you remember for Zejula if your blood counts were low at all? Or how the fatigue was?
Thank you again for sharing.
Diana

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@dianainstaug

HI Dale
Thank you so much for sharing! What exactly were your side effects when you were on Zejula? That is the drug I am looking at. I work at a school and have been on medical leave since my surgery. I am looking to return to work in a few weeks and am concerned about being on a drug that may weaken my immune system. You have been on so many meds, Dale! I wonder if you remember for Zejula if your blood counts were low at all? Or how the fatigue was?
Thank you again for sharing.
Diana

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I had severe headaches and was only on it for a month. They were caused by high blood pressure. Because they couldn’t get my blood pressure under control we decided to stop the Zejula. I was an unusual case so don’t go by me. I know others that did very good on it. Unfortunately everyone reacts differently. I was on Lynparza for several months after Zejula and had very little problems, it just stopped working and tumors had metastasized.

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@pauldale4

I had severe headaches and was only on it for a month. They were caused by high blood pressure. Because they couldn’t get my blood pressure under control we decided to stop the Zejula. I was an unusual case so don’t go by me. I know others that did very good on it. Unfortunately everyone reacts differently. I was on Lynparza for several months after Zejula and had very little problems, it just stopped working and tumors had metastasized.

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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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@dianainstaug

Hi Starko
Thank you for sharing. I need to call my insurance, as well. I was on the drug manufacturer's website the other day and noticed a link for financial assistance. I learned some non-profit organizations also provide assistance. Did you check out any resources for helping to pay for the medication you need to take? I attended the OCRA (Ovarian Cancer Research Alliance) conference the other week and learned of another resource. It is called the Medicine Assistance Tool this was created for patients who need help with paying meds by the Pharmaceutical Research and Manufacturers of America (PhRMA) organization Their website is mat.org. They essentially are a clearinghouse advocacy group helping connect patients with resources. Hope this information might be useful for you.
Thanks again for your sharing!
Diana

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Hi Diana. Thank you so much for your interest and INTEL. So glad to have you as a friend.

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@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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