1. < Gynecologic Cancers

Did anyone test high for CA125, with elevated value of over 800?

Posted by charlotte12 @charlotte12, Apr 14 4:07pm

I have a big abdominal mass arising most likely from the right ovary, and a cyst with abnormal enhancing soft tissue involving the left adnexa. Surgery in 2 weeks. I have no pain, bleeding or other symptoms accept a tight abdomen from the mass. The doctor says the CA125 test is not a reliable indication for cancer.

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califcheryl | @califcheryl | Apr 18 11:31pm
In reply to @charlotte12 "thank you for your sharing your story, my oncology doctor never suggested a PET scan, what..." + (show)
@charlotte12

thank you for your sharing your story, my oncology doctor never suggested a PET scan,
what was the reason for doing chemotherapy first?
My dr. wants to do full hysterectomy, removal of mass, remove ovaries, test tissue during surgery for cancer with tumor markers during surgery, potential remove tissue, more ovaries which may be effected, the ultrasound showed mild pelvic fluid,
I'm 69, I wonder now if I need a second opinion. I only felt bloated after a meal. I have to overcome my cold before getting the surgery. Please respond back.

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I had TIA mini stroke in Nov so doctor wanted to wait for at least 6 months before during surgery. And they found some of the cancer cells In the abdominal wall which they found out with the PET scan. So that also drove decision to do some chemo first.

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1 reply
charlotte12 | @charlotte12 | Apr 19 7:45am
In reply to @califcheryl "I had TIA mini stroke in Nov so doctor wanted to wait for at least 6..." + (show)
@califcheryl

I had TIA mini stroke in Nov so doctor wanted to wait for at least 6 months before during surgery. And they found some of the cancer cells In the abdominal wall which they found out with the PET scan. So that also drove decision to do some chemo first.

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thank you for clarifying, so your situation and health is different than mine, sorry to hear about all the complications. The chemo treatments are working. I keep you in my thoughts.

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crowleykid | @crowleykid | Apr 22 10:51pm

My doctor and I ignore the CA 125 test results. I'm in a clinical trial, so they test for it monthly. It doesn't seem to be meaningful for me.

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1 reply
val64 | @val64 | Apr 23 10:29am
In reply to @crowleykid "My doctor and I ignore the CA 125 test results. I'm in a clinical trial, so..." + (show)
@crowleykid

My doctor and I ignore the CA 125 test results. I'm in a clinical trial, so they test for it monthly. It doesn't seem to be meaningful for me.

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Do you mind if I ask what clinical trial you're in? How did you pick that one?

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1 reply
crowleykid | @crowleykid | Apr 23 5:35pm
In reply to @val64 "Do you mind if I ask what clinical trial you're in? How did you pick that..." + (show)
@val64

Do you mind if I ask what clinical trial you're in? How did you pick that one?

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I was given 4 options after the 1st Clinical Trial failed. That one was Keytruda and miraculous until it went overboard on my immune system.
The 2nd and current trial includes Verzenio (Abemaciclib) & Letrozole because the tumor is estrogen based. These are breast cancer drugs, so the "trial" part is to see about Uterine cancer.
The same trial was performed at Dana Farber, Boston with a small group with good results.
The trial is 18-301 on their website. My trial is at UCLA, the Dana Farber study is closed.
I was given 3 other options. More chemo was an easy NO!
I have info on the 2 other options, but not handy.
The goal is SD as in Stable Disease as determined by CT scans.
I hope this helps.

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