Anyone have experience with gastrointestinal stromal tumor (GIST)?

Thank you so much! My oncologist is recommending Gleevec but is checking to see if there is a contraindication to taking it with Tagrisso - targeted therapy for my liver by cancer - before I start.

Anyone here have lung cancer and a GIST?

I had a Gist removed about 9 years ago from my lower intestines was put on Imatnib (Gleevec) for
3 years. All was good until last year they found a small Gist on the exterior of my liver. Was put back on Imatnib
again, and was keeping it from growing my Oncologist suggested I double the dose but I refused because of the side effects would be brutal I opted for surgery to remove it. because of heart issues they didn't want to do surgery I opted for radiation treatments (cyber knife) and so far so good its shrinking away as it should! I will probably be on Imatnib for the rest of my life but if that's what it takes then so be it! my biggest advice is if they advise a scan do it! early detection is what saved my life 3 times! good luck!

Thank you for the tip to look up Life Raft. I was diagnosed with an esophageal GIST and met with a surgeon this week. The recommendation is an esophagectomy. I’m blown away. This was an incidental finding from my stage 4 lung cancer diagnosis, which was also an incidental finding. Good grief! Looking forward to hearing from this community.

If it is a Gist, checkout the organization called LifeRaft

I have just been diagnosed with I see a pancreatic surgeon in 2 weeks.

Not at first, because looking in my colon only showed the diverticulitis in 2009. Moving forward in late 2010 Gynecologist felt stomach palpitations and ordered a STAT CT abd/ pelv at the hospital.
CT results showed a very large spindle cell tumor was wrapped on the outside around my Transverse colon. They tumor was processed in Histology and assumed GIST even though the C/KIT was negative. A Radiologist recommended that I go to a Duke Oncologist. I seen a Sarcoma Oncologist, and showed his team the staining results along with a pic of this large tumor after resected and he had tumor slides destained and
restained. He told me after restaining slides that tumor was a rare SFT Sarcoma

@pptodd, the waiting is the worse part. I can imagine that your mind is racing in circles. I find it can help to have pen and paper or your phone nearby to jot down your questions as you think of them and then move on to something that distracts you that you enjoy.

Have you started a list of questions for the surgeon?

Did you get a genomic analysis?

Hi,
Yes, I was having rectal bleeding/clots in 2009. I went to my primary care doctor and he examined me and thought that I had colon cancer. A colonoscopy was performed and the diagnosis then was "diverticulitis ". I was still having bleeding and wt. gain issues during the lateral part of 2010, I went to see my Gynecologist for my yearly check up. She noticed large palpitations in my stomach and sent me to the hospital for a CT abd/pelvis w/Contrast. I had a large Vascular tumor wrapped around my Transverse colon. This was right before the
holidays. I had stomach surgery in January 2011, It was a very big tumor and diagnosis was a "GIST " several months later I seen a Sarcoma doctor. He stated that transverse colon tumor was a SFT (Solitary Fibrous Tumor -Sarcoma Stage 1. I was told a rare GIST vs SFT has very similar characteristics. I had PET Scans for several years and then CT abd/pelv w/chest x-ray's every year( 2014 Sigmoid colon had a suspicious area - so I had colon surgery/Sigmoid partially resected). This year August 2025, CT and CXR will be every 2 years, if everything goes well.

My tumor was just found on a MRCP I can’t see surgeon until later this month. Therefore I don’t have a definitive diagnosis. The tumor is wrapped around the head of the pancreas. Radiology report says it is a gastrointestinal stromal tumor. Anxiety is high. The wait is awful.