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How high a CA19-9 have you had/seen?

Pancreatic Cancer | Last Active: May 28 5:03pm | Replies (11)
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@hubby11

Thank you for all of the encouraging comments from everyone.

My wife’s was over 43,000 when they tested 2 weeks ago. Biopsy is scheduled for this next Wednesday to set mine treatment plan and prognosis. Oncologist didn’t want to do any chemo until after that is done to determine specific cancer type, mutation, etc.

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Replies to "Thank you for all of the encouraging comments from everyone. My wife’s was over 43,000 when..."
pdacbrca2 | @pdacbrca2 | May 28 3:15am

I hope she is doing well?

I was diagnosed at stage IV (liver mets) as an “incidental finding” from kidney imaging, and went straight to the ER—silly me, they didn’t think it was an emergency. But I did get a CA 19-9 test out of them, and it came back over 20,000.

It took 2 months to get chemo in me and my CA 19-9 was retested: 45,000. That was terrifying; imaging also showed the longest lesion doubling in length.

CA 19-9 has come down to 1,000 over 5 cycles of gem+cis (I have a BRCA2 mutation). Which seemed low, although looking around here for the first time I see that might still count as high. I double checked, the reference range is 0-35.

I expect to start a PARPi in a month or so. Maybe I’ll stopped rounding down to the nearest thousand, too?

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