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CA 19-9 high but no malignancy
Pancreatic Cancer | Last Active: Nov 14, 2025 | Replies (23)Comment receiving replies
Been a while so wanted to follow up. Since my mom switched to a new doctor after her last oncologist wanted her to start treatment a couple things came up that I wanted to mention.
First thing her most recent ct scan shows no changes(yay). The second this is regarding her CA19-9 levels..in November her CA19-9 were at 22000! I kept researching and surfing the web for anything and everything.
I want to mention that from April 2022 she has been taking biotin for her hair and nails and while doing research I came across an FDA warning regarding biotin and CA19-9 levels:
https://www.clancyclark.com/fda-warns-biotin-may-interfere-with-pancreatic-cancer-lab/
And then:
https://public4.pagefreezer.com/content/FDA/16-06-2022T13:39/https://www.fda.gov/medical-devices/safety-communications/update-fda-warns-biotin-may-interfere-lab-tests-fda-safety-communication
When I saw those 2 sites, I stopped giving her Biotin.
She took another CA19-9 test in January 2023 and am happy to report that her CA19-9 levels have dropped to 7000!
Her next CT and CA19-9 test is in March so I will post an update once we have them.
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@edios1
This is so helpful to me. Thank you. I had a Whipple in March 2025, and successful removal of my pancreatic tumor. Following surgery, though, my CA 19-9 levels were higher than they'd been, and have kept climbing. Current reading is 196 -- much lower than your mom's; but the trajectory has been steadily upward, even while on a regimen of gemcitabine, and now a new regimen: 5F-U with irinotecan. Based on your post, I've just checked my B-Complex vitamins, and noted that Biotin is included. So I'll definitely be checking what happens if I d/c that one vitamin. Very grateful to have your posting about this. It may not make a difference in my case, as my two Signatera tests since surgery registered "abnormal" results (though the second was lower than the first), but it's tremendous to have something to try here. Like your mom, I'm basically feeling well and doing well, so the CA 19-9 rise has been baffling -- especially in the absence of radiological evidence of disease. All the best to you and your mom!
nbcesq