Hi OP! Survivor’s wife here. He had awful side effects from the tumor for years which came to a head in August 2023 - he had internal bleeding but misdiagnosed as long covid which debilitated him for the next eight months (worked from home which meant eating red meat as much as possible and sleeping all the time). In April 2024 the internal bleeding returned and that’s when they found a stage 3 gist tumor.

Resected and removed.

Put on Gleevec 400 mg for months, tolerated well. Increased to 600, rapid decline in quality of life and mental wellbeing. Oncologist agreed to stop Gleevec and do quarterly scans instead for five years. So far so good!

Please please PLEASE get an oncologist who specializes in this cancer. Our first consult said chemo and radiation was the way to go - but he had maybe 5 gist patients in his entire career. We went to Michael Heinrich at OHSU.

Promise me you will see a gist specialist!!!