GIST News A Wave of Information By the LIFE RAFT GROUP

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March 2009

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  • New developments in gene expression profiling by Matt van de Rijn, M.D. There are many types of cancer that can affect humans; they can arise in many different organs and from many different cell types within these organs. GIST is a relatively rare type of malignancy that arises from cells within the muscle wall of the digestive tract. Despite the wide variety of tumor types that exist in human pathology, what they all have in common is that once a tumor has originated somewhere within the body, it can start growing in a destructive manner.
  • Better monitoring for Sutent-related heart problems may be warranted by Jerry Call

    Reviews of patients treated at three major cancer centers suggest that Sutent-related heart problems may be more common than initially reported. Reports of heart failure ranged from eight percent in 75 GIST patients treated at Dana Farber Cancer Institute, to 15 percent in 48 patients treated at Stanford University Cancer Center. High blood pressure (hypertension) was cited by each study as a possible contributing factor to heart damage.

  • Eleven year-old battles GIST with brave face for six years by Jodie & Patrick Brennan Brittany is a five and a half year GIST survivor. At the age of five, Brittany became anemic due to internal bleeding that was caused by an ulcerated tumor in her stomach. She was admitted to The Hospital for Sick Children where she underwent a ten hour surgery to remove the tumors.
  • Italian GISTers gather en masse for the second time, drug options and adjuvant therapy among key topics by Gabriella Tedone On the February 21, the A.I.G. (Associazione Italiana GIST) held its second annual General Meeting at the NCI (Istituto Dei Tumori) in Milan, Italy. The event was fabulous, and we had a great turn out. Patients and caregivers benefited from the information about GIST treatments, medical therapy in advanced disease, side-effects management, drug interactions, role of imaging, stress management of GIST patients and social problems like health insurance, work problems and the cancer patient’s legal rights.
  • March 2009 international clinical trials update by Jim Hughes
  • Spanish-speaking GISTers create an online home for themselves by Vicky Ossio Some of our GIST friends might think it was fortunate that my daughter Carolina was diagnosed with GIST in the United States. The truth is that she, like so many GISTers in America and internationally, was actually misdiagnosed, but it is fortunate that she lives in the United States where she has insurance to help her pay for her treatment.
  • Colombian GISTers meet in-person for first time in Bogota by Rafael Becerra On February 28 the first meeting of Columbian GIST patients was held in Bogotá at the Hotel Dann Carlton. GISTers came from all over, including Bogotá, Cali, Pereira, Neiva, Barrancabermeja, Girardot, Cúcuta.
  • LRG holiday campaign update: Raising support and spirits by Tricia McAleer The LRG would like to thank our top three support-raisers! A support-raiser is someone who demonstrates their commitment by volunteering, donating and spreading the word about GIST throughout the year.
  • Cancer in the News On September 16, the Centers for Medicare & Medicaid Services (CMS) broadened the scope of its National Coverage Analysis (NCA) on PET coverage after receiving public input indicating that the current coverage framework which requires cancer by cancer consideration of diagnosis, staging, restaging and monitoring response to treatment should be replaced by a more omnibus consideration. CMS requested comment on whether the current coverage framework should be retired and replaced with a general policy that could be developed and applied to oncologic FDG PET imaging.
  • Kim Trout talks about recent Pennsylvania Life Rafter meeting by Kim Trout We discussed medical treatments and experiences, coping strategies and even made plans for our next get-together.
  • Chicago–area GISTers meet at Wellness Place by Jim Hughes Chicago Area GIST patients held a regular get-together January 25 at Wellness Place in Palatine, IL. There were 16 attendees including seven patients from Wisconsin and Illinois.
  • GISTers meet at MD Anderson When Pat George made an appointment to get his blood levels tested at MD Anderson in Houston, Texas, he thought it would be a neat idea to hold an impromptu gathering of GIST patients while he was at it
  • Gowdy played many roles: nurse, quilter, volunteer, wife and friend Berthe (Maurice) Gowdy, 80, of Hudson, died Wed. Jan. 21, 2009 at the Community Hospice House in Merrimack, NH surrounded by her loving family.
  • Family and home were Heppler’s first loves, gardening and cooking were her passions Mrs. Ellen Marie Sarko Heppler, 47, of Jamestown, North Carolina, died on December 7, 2008 at her residence. A native of Cuyahoga County, Ohio, she was born on July 9, 1960, a daughter of James A. and Betty Mash Sarko. Ellen’s family and home were her first love.
  • Talented musician passes with family by his side After a long battle with illness, so courageously fought, Dan Wiseman went to sleep peacefully, on Friday, February 6th, 2009.
  • A GIST warrior to very end by Judi Lifton The following letter was sent to the LRG email community as well as many of Judi and Lee’s friends. Lee Emerson was a remarkable man who is truly missed by all; Judy has been an amazing caregiver and we thought it appropriate to say goodbye to Lee with Judi’s own words.
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