2 questions: Interpretation of CA19-9. SBRT methods.

Posted by robee @robee, Mar 6, 2023

Hi. I was diagnosed with inoperable pancreatic cancer stage 4. Locally advanced. I am in my 16th session if folfirinox. After session 3-4, irinotecan was removed due to slurred speech and leg shakes. But it was reintroduced for sessions 14 and beyond at a slower rate and so far so good. But the oxilaplatin was removed after session 13 due to neuropathy. Right before session 13 my CA19-9 started to slowly increase. Originally over 2500, then dropped to 65 after session 12. Now it’s creeping back up. Today it was 222. One doctor says it’s cuz cancer is active. Another said this fluctuation is not unusual. I know some docs are very black and white and some sugar coat things. These blood tests are the only thing we have between the two months scans to “see what’s going on” and the increase is scaring me. Scans right before session 13 showed stable disease and no evidence in liver at all. MRI last week showed the same. Waiting for pet scan which was ordered for re staging and possibly adding radiation (SBRT) treatments.

Has anyone had this happen with the CA-19-9??

Also SBRT was suggested by local docs using the standard 5 treatments but I read an article from memorial Sloan Kettering where it’s done in several sessions during an MRI in order to do less damage to near by organs. Has anyone done this??

Below is article in case it helps someone else:

https://urldefense.com/v3/__https:/www.mskcc.org/news/high-dose-radiation-offers-hope-people-inoperable-pancreatic__;!!KGKeukY!zaJIRXFrpB6huZCIYcARFzB0I5fttlwHf9uZG6KLcGnUxGc0FMjEA4pxXzKyW9dJeVzUc8sSoyyreT46EPq-JTLFeebqGQ$

Thanks for your input for both questions.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@mamarina

Robee,
Thank you for sharing
I am also inoperable and had sbrt at miami cancer institute an affiliate with MSK
I received the 5 day treatment. The last week of Sept. things looked stable and scans last week show a few differences so I will get a PET scan in 2 weeks to see whats really going on..
My c19-9 went down drastically to 4 a month after the radiation. But last week was 16. Still within normal. But Dr didnt like the trend so wants the PET.. to dicifer if its scar tissue or if the cancer is still present ..
And Ive had some bathroom issues last month and increased my enzymes which I think are helping but still has me worried
I have a biliary and duodenal stent
Not that I ever have a day with out some discomfort ..
Prayers for good PET results for both of us .. 🙏🏻

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Update
My pet had a few uptake lights. That need to be addressed. And shows something either scar tissue or tumor infiltrating my duodenum stent so need endoscopy to see whats going on. This would make sense with issues Ive been having..
So I still have no conclusive status yet

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