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