This webinar, Sarcoma & COVID-19: Your Questions Answered, produced by the Sarcoma Alliance, originally aired on May 2, 2020 and is available here for viewing. Hear advice from GIST Specialists on this health epidemic and how it affects GIST patients.
Lost in the relentless coverage of the COVD-19 pandemic are the many cancer patients trying to survive and needing to access quality medical care. Our gratitude goes out to all those physicians that have gone above and beyond to serve our GIST patients during this time.
Karen Darnell appreciates the value of life jackets. In her GIST journey, she recognizes the importance of having one constructed from the fabric of family support, GIST experts, email communities and the Life Raft [...]
Charlie Burke has developed a thick skin when it comes to cancer. After surviving bouts with colorectal, thyroid and skin cancers, he was well acquainted with the routine of doctor’s appointments, hospital visits, surgeries and regular treatment that accompany disease by the time a GIST tumor was discovered in his colon. However, as any of our members will tell you, GIST comes with its own unique lexicon to master and set of challenges to overcome.
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 mutation.
“It was such a frustrating time. It was awful,” Linda says, recalling how doctors had recommended she give Glaxo-SmithKline’s drug Votrient a shot but was unable to get Jessica’s insurance company to cover it despite appeals documented by GIST specialists.
GIST is a tricky disease. It’s important for patients to find the right doctor, one who understands the disease biology, treatment options and individualized treatment techniques like mutational and plasma testing. In most cases, we encourage our members to seek a GIST specialist.