Gastrointestinal Stromal Tumor Community (GIST) Community
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Avatar universal



My husband has been battling GIST and last year had sugery to remove the tumor and was taking GLEEVEC to shrink the tumor.. and they said the prognosis is great and doesnt look like it will return. Unfortunately it has returned and is now stage 4 aparently and has to take GLEEVEC for life..I am so confused as to how the staging is classified and all details in regards to treatment and survival rates. Anyone going through this please message me your thoughts, feelings and how you are coping with all this.. any advice would be great..
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Avatar universal
Many of these mesenteric tumors are notorious for reoccurring. So surgery followed by Gleevec is a fairly common scenario, even though these are rare tumors.

The drug does a very good job in targeting the cancer cells only. So your husband will be able to take it long term, with minimal side effects. Kleevec works by targeting a specific phosphate group within each of the active cancer cells, and not in his healthy cells. And it greatly improved the prognosis for patients. Unlike many cancer therapies, this one does a good job in going after the cancer, while leaving the healty cells alone.

Hope he keeps improving, and can lead a fairly normal life.
Avatar universal
I have stage 4 Gist tumors. My understanding is that it is hard to diagnose Gist until it is stage 4. My Cancer is inoperable. My Gleevec quit working after a 1 1/4 years. Another patient my Dr. is taking care of the Gleevec worked for 8+ years. They then tried Sprycel and it never really got started. The main reason I am writing is that they now have me on OPDIVO which has never been used for GIST before and it is working so tell your Dr. as the Gleevec will most likely quit working sooner or later as the cancer mutates and the Gleevec quits working.
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