Hi, i thought I just posted this question but I cant seem to find it. I was diagnosed with stage 4 clear cell carcinoma with a ca125 level of 3900. after chemo i was in complete remission, my ca 125 levels have recently gone approx 7, 14, 26 52, 130. I have had a ct scan and Pet scan and both are completely clear, have you ever seen a rising ca125 like this with the patient still being in remission?
I had a rising CA125 with clear PET/CT and CT scans of my abdomen, pelvis, chest, and brain with no evidence of disease a month after finishing chemo. My onc said I was recurring, but he didn't want to start chemo again until scans or an exam showed something or I had symptoms. I was feeling good at the time, so I agreed. In a very short period of time I went from that to my gyn/onc feeling nodularity on a physical exam, lots of symptoms and when I ended up in the hospital, a CT scan showing lots of disease. I started chemo immediately. There are people on here who have elevated CA125s but they feel fine, and I think that is the key. I believe studies show that restarting chemo early does not prolong your survival time, and I would prefer to not be treated as long as I am feeling good so I can enjoy that feeling for as long as possible. I assume you're under the care of a doctor, so what does your he/she say? Good luck to you. Paula
Thanks for that. I feel fine pysically, its just the worry emotionally. I can not believe that it has come back and I thought a PET scan was really reilable. I live in NZ and find the oncologists to be very negative, during my chemo they told me that I could not get into remission and I did.
Yes, the worry is hard. My onc called it watchful waiting but I called it watchful worrying. I had just gotten to the point where I was doing pretty good at enjoying the day I was in and not ruining it by worrying about tomorrow. But then I found out that's not too hard to do when you're not in pain, but pain changes everything. I hope you can feel well before the beast raises its ugly head. And, it may not. As I said, I know at least one person here lives with a high CA125 and enjoys her life. My CA125 only made it into normal range at my sixth treatment and I only had one more normal after that. It went 12.8, 13, 50, 64, 164 within about two months. The jump from 50 to 64 happened in just 5 days. Who knows how high it is now. Paula
My ca125 started rising about 6 months out from my first chemo. I had a clear petct in Aug. 07. I had a bowel obstructed by an adhesion in Oct. The gyn/onc did not see any visible cancer, but the pathology slides did show microscopic cells. I started back on chemo in Nov., ca125 went from 265 to 33. Donna
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