Our Good News Holiday Campaign is the culmination of our year of “Time to Tell the Stories 2022.” In this series, we celebrate the connections, the celebrations, the events and milestones that we’ve been privileged to be a part of this year. Our 20th anniversary year is winding down and we are wrapping it up by spreading good news & gratitude throughout the season. Your financial donations and selfless volunteerism are what enable us to continue providing vital services to our GIST community.
Celebrating #GIST Research
Nancy Hughes Welsh
Every story I tell about GIST involves my daughter, Nancy, who from 1991 to her death in 2005 was first a leiomyosarcoma and then a GIST patient.
In 2003 our small local GIST community volunteered to man the first ever Life Raft Group booth at the American Society of Clinical Oncology (ASCO) annual meeting in Chicago. At that point, Nancy had been fighting GIST for 12 years and was a committed volunteer. Within weeks of entering the imatinib trial in 2001 side effects forced her out. Going to ASCO was a way of overcoming that setback. Her mom Margi and I went along to help.
It was a pivotal year in GIST. Dr. Brian Druker was the keynote speaker. He had championed the approval of Gleevec (imatinib) for CML. Nancy’s oncologist snuck us into the session, and we heard him speak. Dr. George Demetri who led the Gleevec trials in GIST stopped by the booth to talk to us. The book “Magic Cancer Bullet” by Novartis CEO Dan Vasella was out that month. It told the story of the development of Gleevec.
From right: LRG staffer Trish MacAleer, Jim Hughes, Margi Hughes, Nancy Hughes Welsh, and two visitors, ASCO 2003.
With the established success of Gleevec in GIST, 2003 was the advent of targeted therapy in solid tumors. GIST had become a paradigm of targeted therapy for sarcoma. Gleevec was an unprecedented success. And a new similar drug (sunitinib) was in trials.
Following the thread of research and new drug development for GIST has been a singular rewarding experience for me. Dr. Druker’s message was a clear path forward. Listening to George Demetri we could sense the compassion of someone committed to taking that path with patients. For 12 years there had been little hope for Nancy. Even imatinib had failed her. This day at ASCO renewed her hope.
In 2005 after Nancy’s passing, I was invited to the annual meetings of the LRG research team, 12 key GIST oncologists and pathologists facilitated by a grant from Dan Vasella. It was a privilege. I have met the brightest, most compassionate, and most compelling people who are dedicated to finding answers for GIST patients. Often difficult to understand, devilish to translate and not immune to competition…for me it is a thriving world of new ideas, collaboration, and insight. Both exciting…like solving a mystery…and humbling because there is so much to learn and learning proceeds largely through failure.
I would encourage any GIST patient to follow this inquiry to the best of their ability. Understanding this disease helps to manage it. Better understanding at any level offers hope.
I can see that bringing patients and researchers together has made a significant difference. It is a dialogue we need to continue and expand. I have spoken to patients after Life Fest. They tell me what they learned. They recount their conversations with the experts and researchers. Like my daughter they have new understanding and hope.
From the researcher’s perspective I can see that the continuing dialogue with patients creates a sense of making a real difference in someone’s life. It is a reassurance that brings focus to their individual work and fosters collaboration in the search for a cure.
You can help us expand this dialogue by donating to the Life Raft Group this giving season.
– Jim Hughes, Board Member & LRG Clinical Trials Coordinator