3C ovarian cancer: tumor markers gradually rising, what's next?

Posted by starko @starko, Dec 16, 2020

Anyone had stage 3C ovarian, surgery and chemo that seemed to destroy the cancer, then 2 years later, the cancer tumor markers are gradually rising, although a CT scan cannot yet pin point the spread? I have had metformin, Lynparaza to stop the progression but neither had a positive result and Lynparaza had horrible side effects. Any similar experiences? Any other meds that seemed to work? No BRAC mutations.

I am sorry to hear that. Interesting that the scan can’t pick it up. Interested in the response. I just had endometrial cancer come back after 6 months.
I had surgery and thought it was gone

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Hi @starko and @miriam57. Starko, I augmented the title of your discussion a little to make it more specific and added it to the Gynecologic Cancers group too (https://connect.mayoclinic.org/group/gynecologic-cancer/). Additionally, I think you might both be interested in a similar discussion about tumor markers that @stparker54 started a little while ago.
– CA-125 Results Went Up: Should I be concerned? https://connect.mayoclinic.org/discussion/ca-125-results-rose/

I'm tagging fellow members @pauldale4 @odette @leannn @rochellewisner @dswiney @ch0c00ki35 @maryeq1516 and @lilah to get their experiences with tumor marker concerns.

Starko, does your oncologist suggest other imaging tests besides the CT scan? What's the next step?

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I am sorry to hear that the tumor markers have been gradually rising. I am glad that you have written because you mentioned that you were going to Mayo AZ in November and I was concerned about issues with traveling from Hawaii due to COVID. (Hawaii is the only state we can travel to actually with our many restrictions. I love Hawaii and I have family there, but I don't see a visit any time soon.)
Were you able to go to Mayo for your care? What did they recommend at this point? I do believe you can feel confident in their advice as they are the best. I do not have HGSOC so I am not familiar with the medications you have been given. There have been some concerns about metformin in the research, but I don't really know anything about it. If your CA125 was high prior to surgery, typically they will consider it a good indicator, but it can rise from other reasons, I believe. Hopefully, they can propose other types of treatment if necessary as there are many more options available. Stay in touch and stay well.

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Thank you, Odette. I have been consulting with Mayo, AZ. The drugs I mentioned were their recommendations. Unfortunately, they had no effect. I am open to new suggations.

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I also have 3C diagnosed 6/16/16. Also BRCA negative. Have had several treatments including a clinical trial. Carbo, taxol, surgery, more carbo, taxol, break for 9 months, recurrence. Carbo, gemzar, 2 different PARP inhibitors, side effects and progression of disease, clinical trial of herceptin and Perjeta, stopped because of side effect, back to Carbo, taxol and Avastin for 6 months and now on Avastin only, every 3 weeks since April and it’s been keeping my tumors from progressing. I have a few side effects but I’ve realized there’s some with whatever you are on. You just have to learn what helps. There’s a Facebook private group “sisterhood of Ovarian Cancer Survivors” where you can search for answers to your problems. If you have a specific question for me, let me know. My name is Dale.

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@starko

Thank you, Odette. I have been consulting with Mayo, AZ. The drugs I mentioned were their recommendations. Unfortunately, they had no effect. I am open to new suggations.

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Just checking in with you. Hope you have found some useful information/help as you move forward with your care. Because I have a different histology, I am not familiar with the medications you are taking, but I'm assuming you have been given good advice as you proceed. Take care.

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@starko, I'm with @odette and wanting to check in with you. How are you?

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@colleenyoung

@starko, I'm with @odette and wanting to check in with you. How are you?

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Things are not going well. My cancer markers had continued to slowly increase and drugs (metformin, Lynparza ) seem to not make a difference. The cancer has traveled from my ovaries to my brain. It was suggested by a local neurosurgeon that I have an immediate MRI which indicated a huge growth on my lower cerebellum. This growth was removed the following day and suddenly my cancer markers became normal. I am scheduled for four brain radiation sessions beginning next week. If all that is successful, I assume I will be put on avastin. We are also testing to see if the cancer has permeated my esophagus. More MRIs for brain, spine coming up this week.

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Thinking of you during this time. Keep fighting

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@starko

Things are not going well. My cancer markers had continued to slowly increase and drugs (metformin, Lynparza ) seem to not make a difference. The cancer has traveled from my ovaries to my brain. It was suggested by a local neurosurgeon that I have an immediate MRI which indicated a huge growth on my lower cerebellum. This growth was removed the following day and suddenly my cancer markers became normal. I am scheduled for four brain radiation sessions beginning next week. If all that is successful, I assume I will be put on avastin. We are also testing to see if the cancer has permeated my esophagus. More MRIs for brain, spine coming up this week.

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It is fortunate that your neurosurgeon took such quick action. The procedure seems to have produced a positive outcome with the markers normalizing. Hopefully, the upcoming radiation sessions will be successful and the new medication will be effective. I'm so sorry you are facing these new challenges, but as Miriam has said, "Keep fighting" and we will all be here for you.

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@starko

Things are not going well. My cancer markers had continued to slowly increase and drugs (metformin, Lynparza ) seem to not make a difference. The cancer has traveled from my ovaries to my brain. It was suggested by a local neurosurgeon that I have an immediate MRI which indicated a huge growth on my lower cerebellum. This growth was removed the following day and suddenly my cancer markers became normal. I am scheduled for four brain radiation sessions beginning next week. If all that is successful, I assume I will be put on avastin. We are also testing to see if the cancer has permeated my esophagus. More MRIs for brain, spine coming up this week.

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Starko: did you have actual brain surgery to remove the growth in your brain or was it treated with Cyberknife technology? When I had 2 lesions in my brain in December 2009, they were removed surgically. Subsequent brain lesions in 2010 were treated with Cyberknife (a great radiation technology). I have been free of brain cancer since October 2010. I have an MRI every 6 months as a check-up.

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@starko

Things are not going well. My cancer markers had continued to slowly increase and drugs (metformin, Lynparza ) seem to not make a difference. The cancer has traveled from my ovaries to my brain. It was suggested by a local neurosurgeon that I have an immediate MRI which indicated a huge growth on my lower cerebellum. This growth was removed the following day and suddenly my cancer markers became normal. I am scheduled for four brain radiation sessions beginning next week. If all that is successful, I assume I will be put on avastin. We are also testing to see if the cancer has permeated my esophagus. More MRIs for brain, spine coming up this week.

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@starko, I'm so glad I checked in with you. Thank you for taking the time to share what you're going through right now. I know you're concentrated very much on your health and managing new treatments. Just remember, your gyne gal friends are here when you need a virtual hand or shoulder.

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