So far in 2021, our ‘It’s Time’ campaign has emphasized twelve important points concerning biomarker testing and the important role it plays in a GIST patient’s journey. We will always advocate on behalf of GIST patients and keep sharing this message with all patients and physicians until it is standard of care that all GIST patients receive testing early in their journey. We will keep sharing stories from other GISTers that illustrate how knowing their mutation helped them and their medical team chose a more effective treatment for their GIST. We will produce more webinars with experts that discuss mutations in GIST and testing. We will continue to share materials that will help GIST patients talk with their medical team about testing, and we will always be available to discuss mutations and testing with you personally via email, phone, GISTChat, or a GIST Mentor.
Did you know that not all GISTs respond to Gleevec, the standard first-line treatment? Gleevec can be often be prescribed prior to surgery in an attempt to shrink a tumor so that surgery can be performed safely, or as a post-surgery treatment to prevent recurrence. But what if your mutation is not one of those that responds to Gleevec? Having as much information at hand as you possibly can will help you and your doctor make the best choices for your treatment.
LRG GIST Mentor Rob Taylor shares how testing impacted his treatment direction. Rob was diagnosed with wildtype GIST which typically has no effective treatment. His oncologist prescribed imatinib, in lieu of no treatment at all, but Rob’s tumors kept growing. After Rob learned about biomarker testing, he requested testing and the mutation that was driving his GIST was discovered. Once that happened, Rob was put on an effective treatment for his GIST and his tumors are shrinking.
You can listen to Rob share his journey of discovering his mutation & self-advocacy:
If you would like to talk to someone about mutational testing, please contact our Director of the Life Raft Group Patient Registry, Denisse Montoya at firstname.lastname@example.org or you can reach one of our staff by phone at 973-837-9092.
Ask how you can become a part of the GISTChat community by emailing email@example.com