Gist Tumors...Anyone Else?

My mother was diagnosed with a spindle cell sarcoma, Gastrointestinal stromal tumor about 2 years ago. She has had a couple of very difficult and painful surgeries. In January the doctors told her they have done all they can do and surgery when the tumors interfere with quality of life is the only treatment. They told her it would be a year before she needed to have some sort of aggressive treatment. Another doctor told her it she would only live another year.

She did try a new medication that was FDA approved for this type of cancer, but it did nothing for her cancer. My question is has anyone else had this type of cancer and what treatments have you had. We have sat around for 6months now and done absolutely nothing. Now she is in need of more surgery and the surgeon doesn’t want to do it because he is afraid the tumors would return faster than he could keep up with them. When she cannot stand the effects of having the tumors is when he will schedule surgery.

Hi Kathy, My name is Cindi. I also had surgery in June to remove a tumor in my esophagus. I live in Cols., Oh and had surgery in Cols. I was then told I had GIST and was sent to the Cleveland Clinic, in Cleveland, Oh. It's now October and I am still undergoing tests, and the dr. is considering another surgery and also Gleevec. I am 43 yrs old and was told that this type of cancer is uncommom in females and normally attacks men over 54. Where is your Mother being treated? Have you ever heard of Cancer Treatment Centers of America? I am now consulting with them regarding GIST. I also feel like I am getting the run around and I think it's because it's a uncommon cancer.

Hi Cindi,
It is me again...LOL. My mother has seen Dr. Markham with the Methodist medical Group here in Indianapolis. She saw Dr. Frank Lloyd as her surgeon. She also had a consultation with Dr. Lauar (I am not sure of the spelling of this one). Dr. Lauer is the Dr. that started the study of Gleevec on GIST tumors. He is through Indiana University hospital. It doesn't sound like you are very far away from here so it might be worth your efforts to seek a consultion with at least Dr. Lauer.

It is my understanding that this is a rare type of cancer with varying statistics depending on who you talk to. I have heard there are only 7 other people in the U.S. that have this type of cancer and then I have heard that there are only 250 people in 23 countries. I am not sure what or who to beleive at this point.

Prayers,
Kathy

my mother has gist tumors and they found out back in jan, 04 she was on gleevac also her surgeon removed about 15 feet of small intestine and now she is on sudent which her doctors said it is like a big brother drug of gleevec. she was doing o.k until about until 6/07 she is back in the hospital and the doctors don't really know what else to do she is running fevers because of the tumors and starting to spread to her liver now if any body might something else .. please , please tell me

thank you,

 

On 6/23/2007 Pamf1972 wrote:

my mother has gist tumors and they found out back in jan, 04 she was on gleevac also her surgeon removed about 15 feet of small intestine and now she is on sudent which her doctors said it is like a big brother drug of gleevec. she was doing o.k until about until 6/07 she is back in the hospital and the doctors don't really know what else to do she is running fevers because of the tumors and starting to spread to her liver now if any body might something else .. please , please tell me

thank you,