Dr. Garg, Dr. Rastogi, and Ms. Kaur
On Sunday March 27, 2022, I presented at the Sachin Sarcoma Society’s 99th Virtual Patient Support Group meeting. This support group is based in India to provide guidance, counseling and support to sarcoma patients in India and all over the world. This meeting was focused on GIST patients and approximately 50 GIST patients and caregivers participated. Dr. Vikas Garg, an oncologist at AIIMS, New Delhi, India presented on Coping with GIST followed by a Q&A and concerns session hosted by GIST specialist Dr. Sameer Rastogi, AIIMS, New Delhi, India.
I presented on the Role of Mutational Testing and emphasized the need for mutational testing for all GIST patients by stating that mutational testing is not only important for GIST patients, it is critical. Some patient questions and points addressed during the meeting were information regarding Carney’s Triad and the need for germline testing as well as discussion about side effects including joint pain, vomiting and fevers.
In addition, follow up questions from my presentation included when and how to know if a GIST patient has developed a secondary mutation, discussion about a patient who is wildtype but responding to imatinib, differences (if any) in Next-Generation sequencing (NGS) India versus USA and access to medications not available in India, like ripretinib.
The meeting also opened the opportunity for the Life Raft Group to provide guidance on rare cases that were seen within the group, including a 17-year-old patient with a very aggressive GIST and a loss of CDKN2A. The meeting was concluded with a presentation by a GIST patient on his journey with GIST and a poem recitation by a patient on her experience when she was first diagnosed with GIST.
The meeting was conducted in English and Hindi to ensure all participants would be able to understand details about GIST.
I would like to thank Dr. Rastogi, Mrs. Rashi and the Sachin Sarcoma Society for the invite and opportunity to present and share the importance of mutational testing.