I was diagnosed with gist 3 years ago. It isnt always in the stomach. Mine happens to be in my pelvic cavity. There is a very good support group on facebook called gist international i would reccomend you follow as well. I have gone through gleevec and sutent and am currently on a clinical trial. Its important to know your mutations and type of gist. I am exon 9 ckit. Its important for you to know your miotic rate as well. I am inoperable but some patients are able to have a resection leaving them with a partial stomach. Dr jonathan trent is a gist specislist in miami fl. Does mayo have a gist specialist?