Gastrointestinal Stromal Tumors

How long can GIST patients stay on Gleevec before it stops working?

Hello - 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.

What can I do about severe nausea after esophageal stent for GIST tumor?

I was diagnosed with a gist tumor 12-17-25. I could swallow but had severe pain because my esophagus was being closed do to the tumor against it. I had a stent put in my esophagus so I could get pills and liquids down. It measured at 7cm and the Dr won’t do surgery until it shrinks to at least a 6. I’ve been nauseous since the stent placement and I don’t want to take the Gleevec until the nausea is controlled. I’m taking zofran and reglan not helping. I can hardly eat(full liquid diet) or drink anything. I’m miserable! I don’t know what to do. Was in the hospital for about 18 days. Seeing my gastroenterologist in 3 days but before that I’m having a gastroesophageal xray to check the stent. Also I’m scared to take the gleevec.

How often does ascites occur with GIST cancer at diagnosis?

Hello all! Im new here and waiting to see my GIST specialist the 30th of this Month. How often do yall have ascites with you cancer when 1st diagnosed?

What should I expect with anemia and low B12 after GIST surgery?

I had GIST surgery with a partial gastrectomy in April. Mass was found when I had a CT of my chest and believed to be an adrenal tumor. Incidental finding Surgery was for that and when the procedure started it was discovered to be a 7.5 x5.5 x5 cm GIST at my Stomach fundus. It was removed and was Malignant. I’m currently on Imanitib 400mg. Surgeon and Oncologist all state that I’m very lucky. So I’ll take that. Now I’m experiencing some Anemia with very low B12 Have scan every 3-4 months n Blood work every month 🤞

How do you cope with Gleevec side effects like dry skin and neuropathy?

I was diagnosed with GIST back in Sept . I am on Gleevec . I started out with no symptoms at all . Then I had to stop for a week for antibiotic treatment of pneumonia . Went back on after that. I have some symptoms now . Very dry skin, neuropathy in hands and feet . I have thinning hair but still can style it . Bothered now with night calf cramps and foot cramps. Even with all of these things, it’s tolerable . I’d not want to be taking the alternative chemo treatment . I feel lucky it could be so Much worse . I’m ok 🤞🙏🏻💕

Anyone else had GIST tumor surgery after Gleevec treatment?

Hello I am new to this sight, was diagnosed on 12/23/23 6cm tumor where small intestine meets my stomach started taking Gleevec on 1/6/24 tumor shrunk in half by May and had surgery to remove the tumor been clean since still take 400 MG Gleevec every day and have a scan and bloodwork every 4 to 6 months. Anyone else have a similar experience?

How do others cope with GIST treatment fears and side effects?

Hi I was diagnosed in July 2015 with rectal GIST. They thought it was a fatty benign tumor and because of the large size they left some tumor behind. At pathology it was GIST exon 11 very high risk. I received 400mg of Gleevec every day until now and I have to take it for life I am complete response and never had a recurrance I have developed a liver and pancreatic problem, had to stop Gleevec for one month while undergoing many scans, procedures and blood tests. My liver enzyme are back to normal for now, I am back on Gleevec. The outcome of all the scans are inconclusive Common bileduxt 16 mm and pankreatic duct in head 6 mm. On my EUS there was nothing found, but because of the enlarged ducts I have to be observed with a scan every 6 month. I also have a tongue displasia that is treated for years with many biopsies and surgery. This is my Story. I am always very scared and thankful at the same time that I have life to this day and hopefully more in the future. I am also happy to have found this place where I can share my cancer. I am very thankful Manuela

How Do You Combat Your Gist?

Good morning and let's stand strong! What are some of your methods to combat your gist?