CA19-9 going up and back pain at night - recurrence?

Posted by omus1omus23 @mmatunis, Nov 9, 2023

I was diagnosed with pancreatic cancer in July 2022 - stage III, borderline resectable. I had 12 treatments of FOLFIRINOX and followed by a Whipple surgery at the end of January 2023. My margins were all negative, but 1 of 11 lymph nodes was positive. The pathology report after surgery suggested that my cancer is actually a cholangiocarcinoma (bile duct cancer), which is different but similar to pancreatic cancer. Since surgery, I have had CT scans and blood work (including tests for circulating tumor DNA and CA19-9 levels) done every 3 months. The CT scans have not revealed any metastasis and my ctDNA tests have detected no tumor DNA. However, my CA19-9 has gone up over the past 6 months, from 7 to 28 to 76. This has me concerned, as the number only dropped from the time of my diagnosis through surgery (see attached graph). I have also recently started experiencing back pain at night, something that I had before my diagnosis, but that went away during my treatments. This also makes we worry. My oncologists suggests to wait for the next round of tests in another 3 months. Is there anything else I should be thinking about doing? I am currently receiving no additional treatment.

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@mnewland99

Thank you for well wishes. I got the ctDNA test yesterday, and also, to my surprise the oncologist ordered antigen testing at the same time (my primary gave me an order this week for Thursday which is when I was planning on repeating it). I didn't receive any info on results from the oncologist, but my endocrinologist shared the info with me and my antigen is now at 72! What my husband and I are amazed at is that my exponential increases are very closely matching those of omus1omus23. I like the idea of a total pancreatectomy. I'm not sure about chemo since my cancer coming back so quickly after completing chemo. I do still have my port, but this is only due to the fact that I called my oncologist after the first abrupt rise in CA19-9 and told the team I wanted to cancel its removal, and they just said "that's fine".
If anyone knows of a good oncologist in southern California, please give me some names! I actually live in Orange County.

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Go to UCLA Health’s Agi Hirshberg Center for Pancreatic Diseases.

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@henfayp

Go to UCLA Health’s Agi Hirshberg Center for Pancreatic Diseases.

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Ok, thank you! Why do you recommend them? Were you a patient there?

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@mnewland99

Ok, thank you! Why do you recommend them? Were you a patient there?

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Top site in So. Ca. I go there for my Pan Can. One of the top 4 sites in entire CA.

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