GIST News A Wave of Information By the LIFE RAFT GROUP

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April 2009

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  • GIST diagnosis: the pathologist's perspective by Chris Corless, M.D. For a patient suddenly faced with a cancer diagnosis, the process by which the diagnosis was made may seem of little interest. It is only the result – traumatic, life-altering – that matters. But there is in fact a well defined pathway by which the initial discovery of a suspicious mass is turned into a final diagnosis of GI stromal tumor (GIST).
  • In your eyes, I am complete by Erin Kristoff Since joining the Life Raft Group in January 2007, Janeen Ryan, caregiver to her husband, Larry, has acted as a jester, a confidante and a supportive shoulder to many in the LRG email community. Usually a ray of sunshine (but occasionally a bolt of lightning), Janeen is equally at home making suggestions about speaking with your doctor or inventing new written ways to express frustration with a medical blunder. In each post, she signs off with a snippet from her daily life.
  • LRG Research Team holds second in-person meeting: new tissue banking initiative born by Marisa Bolognese On March 6 and 7, the LRG Research Team met for the second in-person meeting at Brigham & Women’s Hospital in Boston, Mass. The Team had previously met in Portland, Oregon at Oregon Health & Science University (OHSU) in October 2008.
  • Community hospitals vs. cancer centers: should the patient be informed of the risks? by Erin Kristoff In a January New York Times article, “Should Patients Be Told of Better Care Elsewhere,” the author, Denise Grady, discusses a friend who was diagnosed with rectal cancer and needed surgery, radiation and chemotherapy.
  • April 2009 Clinical Trials Update by Jim Hughes Updates on US Clinical Trial Listings
  • Life Raft members share medical solutions by Jerry Call Elevated liver enzymes are a rare side effect of Gleevec and can occur in CML and GIST patients. Auto-immune hepatitis appears to be one cause of elevated liver enzymes in some patients where the body’s own immune system begins to attack the liver...This article was originally published in the September-October 2005 issue of our newsletter. Since it has been a constant source of information, we thought reprinting it might be helpful for other GISTers to read.
  • Janz, 65, left behind a devoted family Dennis Desmond Janz, 65, of Jefferson, died peacefully on Friday, February 6, 2009, at his home in Jefferson surrounded by his family after a long fight with GIST cancer. He was born on Oct. 21, 1943 on the family farm in the Town of Seneca, Green Lake Co., Wis., the son of the late Ervin and Lucille (Verch) Janz.
  • Schnorf fully enjoyed life in spite of GIST by Helga Schnorf No one can predict how one will react when confronted with a cancer diagnosis. Dr. Ulrich Schnorf (Ueli) was, during his lifetime and shall continue to be, an inspiration to many. Sadly, Ueli passed away on March 15, 2009 from diffuse large B-cell non-Hodgkin lymphoma.
  • Are you on Facebook or Myspace? Check us out and join our cause! The impact of social networking sites has grown exponentially in the past few years. What used to be a high school and college-age “playground” has now become something much more important.
  • Check out our new Familial GIST pamphlet The LRG has just published a Familial GIST pamphlet which will help answer some commonly asked questions about the hereditary form of GIST.
  • Website of Worth Occasionally the LRG likes to feature a website we think could be of benefit to GISTers and caregivers. The Ripples Project is a website that offers one thing, inspirational quotes, and let’s face it: everyone needs a little inspiration now and then.
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