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Another CA-19 post...How do you not freak out when it rises?
Pancreatic Cancer | Last Active: Nov 19 8:21am | Replies (11)Comment receiving replies
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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Hi @markymarkfl! My tumors are actually in the soft tissue, not on my peritoneum. I am rare in several ways, my cancer is adenosquamous, rare and apparently very aggressive. I am in a study at Princess Margaret in Toronto, where they actually grew an organoid that matches my tumor. My mutations are KRAS G12V and Arid1A E1108. They're supposed to try different drugs on the organoid to see how it responds but I don't think they've done that yet. Also I found out that they are doing ctDNA testing on my blood as part of the study, but not giving me the data (!). But I can ask my oncologist to include that in my bloodwork so I will request this at my meeting week after next. Thank you for the suggestion!