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Anyone have experience with gastrointestinal stromal tumor (GIST)?

Sarcoma | Last Active: Nov 12 8:53pm | Replies (77)
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@suitebrandi

I found out I had a gist on my esophagus in 2015 had 2nd biopsy (endoscopy). and got an infection that turned to encephalitis in my brain! 4 months of no memory severely sick,
,!! They gave me a new drug at the time 1year later called Gleevec it reduced my gist at a surprising rate! I was already for the surgery so I went ahead with it! So sorry I did I didn’t understand all the small problems I would have! I’m so grateful that I had no chemo no radiation other drs say my surgery was done well ! But I choke a lot and it took two years to get my gut settled and I have to eat 6-8 times a day and I can’t sleep flat !!! Before all this I had a constant choking cough never found out why!!! 14 years still coughing! Now today I found out I have colon cancer and the new adventures begin!!!!!! So any advice is appreciated!

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Colleen Young, Connect Director | @colleenyoung | Feb 4, 2023

Hi @suitebrandi, welcome. You've come to a good place to connect with others living with GIST like @mwebste1 @deejay1950 @martiy @chayatexas @poula and others.

Brandi, you've been through a lot. Having surgery to the esophagus is no picnic. I think you might also appreciate following the discussions of the Esophageal Cancer Support Group as well: https://connect.mayoclinic.org/group/esophageal-cancer/

Members of the esophageal cancer are familiar with many of the trials and tribulations you are facing. See this discussion where members talk about chronic cough and choking.
- Excessive Mucus with Esophageal Cancer https://connect.mayoclinic.org/discussion/excessive-mucus-with-esophageal-cancer/

Colorectal cancer too?! There's a specific group for that here:
- Colorectal Cancer support group https://connect.mayoclinic.org/group/colorectal-cancer/

Brandi, do you have Lynch syndrome? Have other members of your family had cancer?

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