Center for Cancer Research hosts 10th Annual GIST Clinic

Bryce Werner, center, poses with his family

Bryce Werner, center, poses with his family at the end of the 2017 Pediatric and Wildtype GIST Clinic. “We came to get but also to give.  To get information but also to give, to help current and future patients,” says mom, Tiffany Werner.

Patients and specialists from around the world gathered for the 10th Annual Pediatric and Wildtype GIST Clinic, which took place Wednesday, July 5 through Friday, July 7, 2017 at the NIH Clinical Center in Bethesda, Maryland. Occurring once a year, the clinic convenes clinicians, research scientists and advocates from across the country to consult with patients who have GIST.

Gastrointestinal stromal tumor or GIST is a rare cancer that forms in or near the gastrointestinal tract, which consists of the stomach, small intestine and large intestine. GIST can be a genetic disease, but not all cases of GIST are genetic. The patients who come to the clinic vary in age and stages of disease; some have been dealing with GIST for years and others for just a few months.

The GIST clinic is unique in that it brings patients together with the country’s experts in GIST to give them more information and describe complicated medical terms and diagnoses in clear language. The patients have a meeting with all of the physicians that focuses on their specific case where the patients can ask their questions and seek advice on treatment and managing their disease.

Because GIST is so rare, there are few specialists across the country to treat these patients. The clinic provides a space for patients to meet with specialists, sometimes for the first time. Christine Gonzales, a first-time patient of the clinic, is from New Mexico and hadn’t seen a specialist until coming to the clinic. “It’s been super amazing because I’ve never talked to a specialist about this cancer,” she says. “It’s taken away that “deer in the headlights” look of people not knowing what you’re talking about.”

A large part of the clinic program is to provide storage for GIST tumor samples that can then be accessed by researchers around the world to try to decipher more about this disease.  As the cancer is rare, it has been a challenge to amass a large enough number of samples to be able to draw conclusions. This resource is one of the main reasons Bryce Werner and his family came to the clinic.

“We came to get but also to give.  To get information but also to give, to help current and future patients,” says mom, Tiffany Werner. “We’re just thankful for everyone here and everything they do.”

The physicians benefit from the clinic as much as the patients. Fernanda Arnaldez, M.D., the Director of the GIST clinic and a physician scientist in the Developmental Therapeutics Branch, says research has already progressed since the first clinic because of the patients and how they contribute to research. A new clinical trial studying GIST is opening later this year at the NIH Clinical Center in part because of the GIST clinic efforts.

“Seeing the patients at the clinic every year is what keeps us going,” she says.

Summary Posted: Sat, 07/01/2017