GIST

[tgronski]

Hello,
My husband was diagnosed on June 14th with GIST. He was severely anemic due to the primary tumor in his stomach bleeding. The primary tumor was removed with about 1/2 of his stomach on June 22. He has many dozens of tumors in his liver. The surgeon decided to biospy the liver (a second time) during stomach cancer. The liver continued to bleed and a third hospitalization was necessary to get the resulting anemia under control and drain his abdomen. It has been a horrible month for us. He is 40. He is unable to start the Gleevec until the bleeding has been well controlled for 3 weeks. I am so worried about him despite the good news reported regarding Gleevec. The oncologist has not been very straight-forward with him, and he doesn't want to know what will happen next, Gleevec side effects, his prognosis etc. I WANT TO KNOW. I spend every available minute researching. I would love to connect with others who have this type of cancer. I have many questions. The gistsupport website is full of great information. Please post if you or a loved one has this cancer.
Thanks for listening.
Tammy

[mommaof2]

Hi Tammy,

This is a pretty late response to your post, but I have only recently joined these forums. I'll just copy and paste my intro so you know who I am....

2 1/2 years ago my husband was finally diagnosed with GIST when he ended up in emergency because he was in so much pain he couldn't handle it anymore (they had misdiagnosed him for almost a year with ulcers/ acid reflux).
They scoped him and found a large tumor on his stomach. They estimated it was within a day or two of tearing through the stomach wall so they performed emergency surgery. They removed his entire stomach, the 9 cm tumor, his spleen and part of his pancreas. They wanted to be aggressive in order to help him the best they could. He recovered and went on a Gleevec clinical trial for 1 year.

About 4 1/2 months ago they found an enlarged lymph node. They told us that they would wait and see on his next scan and if it was bigger they would have him go in for surgery to remove it. About 2 weeks ago they told us his latest results. The tumor had doubled and was now 3 cm and they had found more spots towards the back of his abdomen and sadly in his liver. So now it breaks my heart that it is now metastatic. They said they won't be doing any surgery because of this and he will be going back on Gleevec. God willing it will still work.

My husband is turning 35 this December, I'm 30 and we have 2 kids, a 4 1/2 year old boy and a 1 1/2 year old girl.



I see that your husband is young as well, so trust me I feel your pain. What your husband went through is very similar to my husband. He was severely anemic as well due to the tumor in his stomach.

Since I posted the above to the Intro sticky, my husband has gone on Gleevec again.

Hang in there and please know that you'll be in my prayers. If you would like to chat I'm here!!