Hello everyone, it's Becky (the gist patient) again,

I want to thank thank Barb and Lisa for their input regarding the 
soreness of the inside of my mouth and tongue.  I wasn't able to 
locate Biotene toothpaste, but I did find Biotene mouthwash and am 
using that.  I may also try the vitamin E trick.  I plan to ask my 
oy oncologist about Nyostatin when I see him in a couple of days.

I believe that the problem is side effect of taking gleevec, 
although I don't believe that it occurs very frequently.  I did find 
some literature in the Express Scripts Drug library that lists sores 
or white patches in the mouth as a side effect.  My oncologist says 
that it doesn't look like a yeast infection, and is calling it 
mucositis.  However, I did try 2 courses of Diflucan, without 
improvement.  The good news it that it is tolerable, and doesn't 
actually interfere with my ability to eat.  It's just uncomfortable.

Yes, there is a gist support group, and I am a member of it.  They 
are a wonderful support system for me but they didn't have any 
suggestions regarding my mucositis.  Any one who is interested is 
invited to join the gistsupport group.

People with gist have found gleevec to be a godsend--saving many  
gisters who where even in hospice when the initial gleevec trials 
for gist began. However, as with CML, primary resistance to gleevec 
or development of gleevec resistance is a problem.  There is another 
drug (to be called Sugen or Sutent)which has proven effective in 
approx. 50% of gist patients who are experiencing gleevec 
resistance.  Sugen is a Pfizer drug, FDA approval is anticipated 
sometime in 2006.  There are also clinical trials of gleevec 
combined with other drugs taking place.

They are beginning to learn that not all gist patients have the same 
genetic mutation of the c-kit gene.  Some progress is being made to 
determine which genetic mutations respond best to which drugs.  Just 
as with CML patients, we're following the research closely, hoping 
for more answers.

Again,thanks for your help.

Becky Bensenhaver




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