ST. LOUIS On Saturday May 16 a GIST Gathering was held at the Barnes Jewish Hospital complex of the Washington University School of medicine in St. Louis. It was the third such meeting in St. Louis and has GIST patients from neighboring states also attending.
At the meeting three long-time Gleevec users met and shared stories. Each of the patients pictured below has been on Gleevec for at least 8 years: a total of 24 years!
Les Anderhub, Marina Symcox, and Becky Harper.
When these patients started on Gleevec there was precious little known about the drug. Novartis had a web site with the most information, but most of the knowledge was transmitted from the health professionals and they were feeling their way also. What were known were the results of the CAT scans. In most of the cases there was a reduction of tumor size or a stabilization of growth of the tumors. No one knew how long it would last, but a bright light appeared at the end of the tunnel. Up to 2000 surgery was the only remedy, and in most cases that was not enough.
Les Anderhub was originally diagnosed in December of 1993 as having Leiomyosarcoma, a month later the diagnosis was changed to GIST. Les had six surgeries that were directly or indirectly the result of GIST. He had a cantaloupe-size tumor in his rectum which was touching his anus and tail bone. The anus and tail bone and first vertebrae were removed and Les has a permanent colostomy. He had metastasis to his liver three times. The last was in 2000 and he had 10 tumors on his liver which was less than half its original size and was inoperable. The surgeries kept him alive until he was terminal in 2000 and then came Gleevec! Today what they see is so small they believe it is scar tissue and not cancer. For a more complete history of Les’ encounter with GIST, go to “Stories of strength” and look under “Les story”.
Marina Symcox was diagnosed in 1997 with widespread metastatic “GI Leiomyosarcoma” and was told at the time that she had a few months to live. After trying several aggressive but ineffective treatments that were typical of the era before Gleevec, Marina entered hospice in Jan 2000. In the summer of 2000 Marina had become gravely ill with uncontrolled GIST and her time was believed to be very short. Yet during this time, husband Keith first learned about the STI-571 trial (called the B2222 trial) from an Internet support group for Leiomyosarcoma and he chased down the leads provided by members of the group and “grabbed” a scarce enrollment slot in the B2222 trial at OHSU. Marina has done very well on 400 mg daily Gleevec since starting the drug then known as STI-571 in the fall of 2000 in Portland Oregon.
Becky Harper had a series of diagnoses that ultimately proved to be GIST. Her story started in 1983 when she had a grapefruit-sized tumor removed from the small intestine that was labeled benign. In 1996, new tumors were found in the abdominal cavity and liver. Her liver was 5 times larger than normal, filled with metastatic tumors. A liver biopsy was compared with a slide from the tumor of 1983 to show that these tumors were the same as the first one. She was diagnosed with leiomyosarcoma. Her oncologist knew there was no cure, but promised to give her as much extra time as he could, hoping there was a miracle drug around the corner.
Chemotherapy, surgery and 3 chemo-embolizations stretched her beyond expectation to the summer of 2000 when the tumors were growing again and there was nothing else to try. But in September, the oncologist recommended that she go to Dana Farber Cancer Institute in Boston to see about getting into the STI-571 clinical trial. That is where she was diagnosed with GIST in November 2000, but was told there was no more room in the protocol. More Gleevec became available and she started taking 600mg on December 14, 2000.
Dr. George Demetri was amazed when a PET scan taken the very next day showed remarkable decrease in the amount of tumor activity. Both Dr. Demetri and radiologist Dr. Annick D. van den Abbeele have used slides of this PET scan in presentations around the world to show doctors how just one dose of Gleevec can turn off PET activity. Becky went to 400mg of Gleevec after 6 months because of side effects and has remained stable since then.
Today’s outlook for GIST: The consensus was that the outlook for GIST patients is getting better each year. We have gone from no research and almost no knowledge in one decade to many promising new drugs besides the ones now FDA-approved. It is a great time to be alive and promises to get even better.
The comments from the forty-plus attendees at the St. Louis GIST Conference were very positive. Keeping up with advances and learning of the web sites available all were big on the list of favorable comments. They all felt they were not alone in this struggle and expressed camaraderie for their fellow GIST survivors. It is a bond they did not choose, but one that is helpful in the path of recovery.
The following is part of the flyer for the St. Louis meeting:
Patients and caregivers come and join us for our third St. Louis GIST (Gastrointestinal Stromal Tumor) Gathering
Join us for a day to meet others who are facing the same health concerns as you and your caregivers. Presentations include:
Marina Symcox, PhD, cancer survivor, author and co-founder of GIST Support International, will speak about her incredible GIST journey from diagnosis in 1997 and her remarkable recovery with the breakthrough drug Gleevec
Brent Matthews, MD, FACS, Washington University School of Medicine hepatobiliary surgeon, will discuss minimally invasive surgery for GIST.
Ann Plunkett, attorney, Claudia Abbott, insurance specialist and Martha Ballentine, financial specialist, will discuss employment and insurance issues that arise as a result of a cancer diagnosis.
Anyone interested in attending a conference in St. Louis visit http://giststlouis.blogspot.co.uk/.