Anyone have experience with "functioning" Pancreatic NETs?

Posted by justme54 @justme54, Mar 16, 2024

I was recently diagnosed with PNETS saw an oncologist and had a second opinion through University of Kansas. Through that session I learned my tumors are functioning and putting out their own hormones. The 3 levels that are high are serotonin, gastrin and chromogranin A. I was told the normal highs for these compared to what mine are: Serotonin 283/506, Gastrin 180/996, and Chromoranin A < 225/1766. I have discontinued Pantoprazole and was told I could use Pepcid if needed for GERD. I will have another lab done to see if the numbers have changed.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

kim1965 | @kim1965 | Mar 28, 2024

Usually up to 2 weeks, but one week for work as long as you stay away from pregnant mothers. It was fairly tolerable, she just was very tired. The hospital will go over all the details with you.

kevinmonroemi | @kevinmonroemi | Mar 29, 2024

In reply to @meandmysis "What kind of treatment was this and what type of cancer?" + (show)

grade 2 k-67 7% Stage 4 neuroendocrine primary in pancreas with inoperable liver tumors on both sides of liver about 30 of them they are functioning gastrinomas

kevinmonroemi | @kevinmonroemi | Mar 29, 2024

In reply to @meandmysis "What kind of treatment was this and what type of cancer?" + (show)

Sorry it called selective interventional radiation therapy. High dose with y-90 spheres pretty easy to find info online

MB | @bellom | Mar 30, 2024

What kind of hormone test did you get to determine whether your tumor is functioning?

MB | @bellom | Mar 30, 2024

In reply to @charliepnet "I have 1 PNET, diagnosed last Dec. Still educating myself. This is a good sight for..." + (show)

Thanks for the link!

justme54 | @justme54 | Mar 30, 2024

In reply to @bellom "What kind of hormone test did you get to determine whether your tumor is functioning?" + (show)

Not sure but it was blood work.

kevinmonroemi | @kevinmonroemi | Mar 30, 2024

In reply to @bellom "What kind of hormone test did you get to determine whether your tumor is functioning?" + (show)

Just a blood test for gastrin level

justme54 | @justme54 | Mar 30, 2024

In reply to @kevinmonroemi "Just a blood test for gastrin level" + (show)

Looks like my first tests were done on my biopsies and then had follow up blood test for the 3 hormones - serotonin, gastrin and chromogranin a. The last blood test was just the chromogranin a which is now over 2000.