The 12th Pediatric and Wildtype GIST Clinic was held May 21 to 23, 2014 at the National Institutes of Health in Bethesda, Maryland. Coordinated by Dr. Sosipatros Boikos, and based out of the NIH Pediatric Oncology Department under the direction of Dr. Lee Helman, the Clinic is collaboration between clinicians and researchers to collect data, investigate and develop treatment for GIST patients who do not have either c-KIT or PDGFRA mutations. This includes patients with Carney’s Triad, Carney- Stratakis Dyad, and Wildtype GIST. These tumors frequently stain negatively for a protein called Succinate Dehydrogenase, a condition referred to as being Succinate Dehydrogenasedeficient (SDH-deficient).
Wildtype GIST patients from around the country come to this clinic for their case to be reviewed by top experts in the field. While there, they undergo a round of appointments including blood work, pathology, dermatology, a meeting with a social worker and a panel review of their case complete with all the consulting NIH physicians on hand. These physicians have reviewed the case and offer their suggestions and advice for future course of treatment. This year there were nine patients in the clinic. As Wildtype GIST does primarily affect younger people the majority of patients were around their teenage years, but there were a few older patients, a testimony to how difficult this subtype is to successfully classify.
In addition to the patient agenda, research experts gather to discuss updates on the clinical and genetic studies at NIH. During this physician meeting the Life Raft Group gave a presentation to the doctors on the inaugural meeting of its Virtual Pediatric/Wildtype Tumor Review Board. Due to budget constraints, the NIH in-person clinic has been reduced to happening just once per year. A virtual clinic cuts overhead costs and allows international patients who wouldn’t otherwise be able to make it to Bethesda a chance for their case to be reviewed by top experts.
Specialized support services were tailored to a patient’s age and family members’ caregiver status. Seminars were held on topics ranging from Anxiety, Nutrition, Active Living and Alternative Medicine.
On the first evening, clinic members gathered at the NIH’s Children’s Inn for presentations from Dr. Chris Weldon who provided an overview of the science behind GIST and from the LRG about its upcoming GIST Awareness Day on July 13. LRG board treasurer Ray Montague hosted his annual dinner for all attendees and afterwards further socializing continued at a local restaurant for a relaxed conversation over snacks and drinks. This provided a much needed opportunity for everyone to meet and share stories. For many in attendance, it was their first time meeting another Wildtype GIST patient. Common themes of the discussion included how much the caregivers had learned about this disease in a short time given they had never heard of it prior to diagnosis, and the importance of connecting with a GIST specialist.
