How long can GIST patients stay on Gleevec before it stops working?
Community Member
14 days agoHello - my journey has been a long one (that came out of nowhere!) I got very ill and was unable to eat or drink in December of 2019, I thought I was having heart issues and was after countless visits primary care office visits and 3 trips to the ER I demanded a scan. A 4x5 GIST was found in February of 2020 at which time I was prescribed Gleevec to shrink the tumor for surgery. Due to COVID I was unable to have Whipple surgery until December 2020. The tumor, part of my pancreas and duodenum were removed. Scans were clean for 2 years. In May of 2022 I had 3 drop tumors removed from my liver. I was on Gleevec from 2020-2024, then it stopped working on several tumors that had mutated. I was put on Sutent then Qinlock. In 2025 I underwent Y-90 treatment that killed 3 “rogue tumors”. In 2026 (just this month) I began Stivarga and I am scheduled for Y-90 treatment in March to kill 2 more “rogue tumors” (with mutated DNA) I have 2 additional tumors in my liver that have not mutated, grown or metastasized hopefully the Stivarga keeps it that way. I am hopeful and keep pushing through all the medication side effects, procedures and the pain. I am just thankful to be around for my family. PS the Gleevec has been the MOST tolerable medication I have been on thus far.
Accepted Answer
The duration that Gleevec remains effective varies greatly from person to person with GIST, and many factors including tumor genetics and individual response play a role. It's encouraging that healthcare teams have multiple treatment options available when resistance develops, as demonstrated by the progression through different therapies and targeted treatments like Y-90. This journey shows remarkable resilience, and sharing experiences about medication tolerability can be valuable information for others in the community who may be facing similar treatment decisions.
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Community Member
14 days agoThe duration that Gleevec remains effective varies greatly from person to person with GIST, and many factors including tumor genetics and individual response play a role. It's encouraging that healthcare teams have multiple treatment options available when resistance develops, as demonstrated by the progression through different therapies and targeted treatments like Y-90. This journey shows remarkable resilience, and sharing experiences about medication tolerability can be valuable information for others in the community who may be facing similar treatment decisions.
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