There are places, no matter what our personal backgrounds may be, where GIST patients are on the same page. Over and over again in our GIST psycho-oncology we hang in apprehensive balance between our ongoing hope in Gleevec and our dread of its potential for failure – our quarterly Damocles syndrome. Because of imatinib mesylate (Gleevec, Glivec) GIST is a most unusual and somewhat unpredictable tumor, with a rather unique psycho-oncology all its own. That is because GIST is the first tumor for which a targeted molecular therapy was successfully developed and marketed.

Many of us are alive by the grace of Gleevec. But for that even more dear than costly drug, many of us would no longer be here. Indeed, those of us who have been here for only a few years already mourn the loss of too many GISTmates no longer with us - for the simple crime that they “failed Gleevec”. If you knew them as we did, their loss to us and to their families was most certainly a crime - a cruel and capital crime. I tell you these things because such losses too are part of our peculiar GIST psycho-oncology.

All other things being equal, even more than with many other cancers, it seems to me that our GIST psycho-oncology has a rather special, stressful, and recurrently apprehensive plot-line. In the quarterly scenario of our GIST drama, most of us must undergo mandatory imaging studies and other examinations to see whether our disease has recurred or progressed - or if it may still be lurking in dark and hidden places unlit by PET (positron emission tomography). Neither Edgar Allen Poe (The Raven) nor Mary B. Shelley (Frankenstein) ever devised a better plot for recurrent jeopardy and sheer anxiety than the spooky threat and stress of our quarterly GIST scans. We are hardly a rock group, but welcome to the home of The Grateful Brave.