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Scan is key. My CA19-9 was 192 before surgery on February 9, 2024, I was resectable stage 2, 3 of 26 lymph nodes were involved, some nerve involvement, but all margins were clear. My CA19-9 dropped right down to 5 after surgery, stayed around 5,86,7,8,11 all through Folfirinox. I was hopeful for a cure. Last infusion was September 13, then I had a CT scan October 2nd and darnit, 2 lesions in my liver and two tumors in the soft tissue under the skin in my belly (apparently extremely rare to have metastases to soft tissue, but confirmed). And on October 17th, one month after my last dose, my CA19-9 was right back up to 195. So I'm now Stage IV, just finished my first 3-week cycle of Gemcitabene/Abraxane. Good signs are that the tumors in my belly stopped hurting after the first infusion, and my CA19-9 dropped from 195 to 174 after my first infusion, and down to 121 after my second. Sure hope it keeps going! Good luck with your scan.
Replies to "Scan is key. My CA19-9 was 192 before surgery on February 9, 2024, I was resectable..."
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Your numbers are still in the good range, but worth watching. The more often you test, the easier it is to detect a real trend, with answers sooner rather than later which may help you start treatment sooner rather than later if necessary.
You mention having surgery about 9 months ago. Did the hospital save any tissue? If so, could they send it out for a circulating tumor DNA test like Signatera, if they haven't already? You could do the blood draws for Signatera in between scans to get an extra data point on the magnitude of cancer present in your bloodstream, and use that as an additional measure of your chemo's effectiveness.
My personal experience has been that Signatera tends to lag CA19-9, but tracks it well other than the delay.
When you say mets to the "soft tissue under the skin in your belly," are they actually on the outside of the anterior peritoneal wall, or the inside of that wall? I had two mets pop up there (one on left side and one on right side of anterior peritoneum) early on after my recurrence, so I don't know if it's all that rare, or you and I just got lucky.
Wishing you the best!
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