Anyone have experience with gastrointestinal stromal tumor (GIST)?

Hi everyone: My wife had a GIST tumor removed for the exterior of her stomach two years ago and this year they found that it had spread to her liver. She started out on Glivec 400mg per day and shortly after she started, her doctor switched her to a new drug Ayvakit that caused facial swelling almost immediately. She went almost two weeks off that medication and the swelling was showing signs of improvement and then her doctor put her back on Glivec. Three days into taking Glivec and the swelling began to come back. I'm concerned about the swelling and not completely gone and starting back on the Glivec too soon, but my wife is just as concerned about being off the medication too long just as much as she is concerned with the swelling. Also the Ayvakit caused her blood pressure to drop below the bottom 60 and three days after starting back on the Glivec her pressure dropped again. I don't know if she should wait a couple of weeks to allow the effects of that Ayvakit to wear off and then start back on the Glivec or not.

I’ve been on 200 mg daily dose of Gleevec for an esophageal GIST. I wasn’t tolerating the 300mg dose as originally prescribed (I am also on Tagrisso for lung cancer and my oncologist didn’t want me taking too much Gleevec). Within a few days of starting the 300 mg dose I developed significant periorbital swelling. It has subsided with time (and with a 200mg dose) but will occasionally come back but to a lesser degree. I was also having low platelets, WBCs and RBCs causing bloody noses, dizziness and low blood pressure with the 300 mg dose. I feel much better on the 200 mg dose and so far my swallowing issues have not returned and my PET scans show no GIST activity. My oncologist is in no hurry to up my dose. You may want to ask if a lower dose of Gleevec would be a possibility. I’m also trying to eat more red meat to help improve my bone marrow production (Gleevec suppresses it) as well as increase fluids to improve my blood pressure. That sounds counterintuitive because of the increased swelling but for me it was just in my face and not the extremities and my kidney fxn remains good. Increasing fluids worked for me. Good luck to you and your wife. Sending positive thoughts.

On may 12, 2025 i woke up at 1am and i was feeling really bad and very cold but i just shrugged it off and went to work for 6am.

I was at work when my life changed. I went to the bathroom at 8am and I had to poop, there was no pain but I did feel sick like I had food poisoning. Anyhow I was finishing up when I noticed there was a lot of blood and I was terrified. I didn’t know what was wrong but I knew something was wrong. I called my supervisor and said I have to leave and I left. I went home told my girlfriend what was wrong and she drove me to the hospital. Luckily the ER was empty and I was seen immediately. They asked me questions and pressed down on my abdomen and asked if that hurts but it didn’t. They admitted me and soon after that I was cold very very cold, I started to shiver uncontrollably, they gave me 3 blankets and I was still cold and shivering, I then asked to turn up the thermostat to 78. Finally I started feeling warmer. Shortly after they did a CT scan on my abdomen and sent me back to the room. It was now around 12noon and I laid there until 2:30 when they told me I had a large mass. They did not have a radiologist on staff so they sent me via ambulance to the Oschner main campus in Jefferson, LA.
Soon after being admitted the surgical staff came to see me and explained what was going on. They said the mass was large and I was scheduled for surgery may 15. I was scared because I never had surgery before. So the 15th cane and I was brought into the surgery area, they gave me shots in my lower back to numb me and put vibrating wraps on my legs and cushions on my heels and I was rolled into the OR and moved onto the operating table which was very cold solid steel bed. They then put the mask on me and I was breathing normally, next thing I knew I was in the recovery room, I didn’t even remember falling asleep. They brought me back to my room and when I was fully awake the surgical oncologist explained to me what they found. The GIST was 17cm or roughly 6.67in, it was very large but they were able to remove it in one piece along with 2in of intestines. They discharged me on may 18 and I learned first hand practically everything you do you use your abdominal muscles. Weeks later I healed really well and I started taking gleevec July 1.

Because I am at a high risk of recurrence I have to take gleevec for six years and possibly for the rest of my life. The doctors told me that most live full lives while taking gleevec.
It’s also rare for someone my age (38) to have a gist this size.

It’s now august 23 and I haven’t had any serious side effects yet, but some days I do get sad when I think about the future. Will I be alive in 2030? If I have kids now will I see them grow up? What happens if it spreads to my lungs or stomach? What if my girlfriend and I break up? Who would want to date someone with cancer?

I definitely see things differently now, I realized I did not want to work 7 days a week anymore, I want to work a normal work week 40hrs and not 60-80hrs. So far my supervisors have been giving me the weekends off so it’s been nice hopefully it can stay this way.

I try to stay positive everyday and hope that in 6 years I’ll be cancer free

When I read your story, I felt compassion and empathy for you, it must be very painful to have the uncertainty in your life. I want you to know I will be praying for you, and if you are a follower of Jesus, I pray that He lifts you up in this time of sorrow and wondering. I pray that you continue to have a positive attitude, and that everyone around you gives you care and support. I pray blessings over you, and peace, comfort as you move along this journey.

The Lord bless you, and keep you; The Lord cause His face to shine on you, And be gracious to you; The Lord lift up His face to you, And give you peace.

I was having chest pain went to ER did ct scan. Came to my room said you are not having a heart attack but you do have cancer GIST. Go to gastroenterologist this week Gastrointerologist did EUS confirmed GIST went to gastroenterologist onocologist had surgery said they removed all cancer on left side of stomach and small section of esophagus NO gleevec gave me no chemo nothing go back to Dr this on mon 9/8/25. Good luck to me:)