GIST News A Wave of Information By the LIFE RAFT GROUP

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November 2008

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  • Life Fest '08 a success! by Erin Kristoff Despite last minute cancellations, delays, complications and flash floods due to Hurricane Ike, the Life Raft Group’s fourth Life Fest meeting, held September 12 through 14 at the Hyatt Regency O’Hare in Chicago, Ill. was very successful.
  • Plasma level testing: Why it is important and how to do it The Life Raft Group has been speaking a lot lately about plasma level testing. Many GIST survivors and caregivers have asked questions about its relevance/importance and how to go about getting tested. In this issue, we hope to clarify this process.
  • GISTers in Netherlands & Belgium hold 5th annual meeting in 'Life Raft' by Anja Long It was suggested three years ago that the annual meeting of the Contactgroep GIST/Life Raft Group Netherlands/Belgium should be held on a boat i.e. the so-called “Life Raft”. Well, for the five-year jubilee meeting of the group, held on October 4, 2008, this is exactly what happened.
  • New treatments for D842V mutations by Jerry Call Effective treatments for metastatic GIST were born in 2000 when Gleevec transformed the management of GIST. Treatment with Gleevec resulted in substantial benefit for 85 percent of GIST patients, up dramatically from the historical benefit rate of about 5 percent.
  • November 2008 US clinical trial update by Jim Hughes Dasatinib Phase 2: This trial has been on-going for over a year. Initially the trial was for 12 different types of sarcoma; GIST has recently been added to the list of conditions that will be accepted for this oral drug.
  • Kreutz lives and works with cancer “I saw the pain in my wife’s eyes for me. Then I saw her mind work through how she and the boys were going to survive without me. I felt I had let them down.”
  • Campaign 2008 If you live in the United States you cannot turn on the TV, radio or computer without seeing an ad, article or comedy sketch about one of the 2008 presidential candidates.
  • Pediatric GISTer tells it like it is at Teenage Cancer Trust Rachel Gilbert was diagnosed in 2001 with GIST at the age of just 15. Since then she has bounced around from Gleevec (for seven years) to Sutent and back to Gleevec.
  • Mayer’s art on ‘Oncology on Canvas’ tour by Erin Kristoff LRG member and GIST survivor, Ellen Mayer is showcasing her artwork once again, this time in the Lilly “Oncology on Canvas” World Tour.
  • Congratulations Ashley! On November 8, LRG member and Pediatric GISTer, Ashley Young, 23, will marry her long-time boyfriend, Mark Vincent, 21 at their home in Madison, Conn.
  • Arizona GISTers meet! Arizona GISTers met on October 19 in Scottsdale. According to Local Group Coordinator, Janeen Ryan (second from right), “It was a nice turn out with old friends reuniting and new ones being made."
  • Pennsylvania GISTers meet Pennsylvania local group coordinator, Kim Trout met with Judy and Matthew Galbo of Hanover. They shared stories, experiences with doctors and medications and coping mechanisms.
  • A True 'Ironman' Steven Eldred raised money for the LRG by entering in his first Ironman competition, July 19 in Lake Placid, NY.
  • Sharla Ellingham, wife, mother, grandmother, passes at 76 Sharla Bea Ellingham, age 76, of Polson, Mont., passed away at her home Friday, Oct. 17, 2008, from natural causes.
  • Global GIST Network adds new GIST representative
  • David Paulsen, 57 David E. Paulsen, 57, of Lakewood, Colo., passed away October 8, 2008 after a long and courageous battle with GIST.
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