An agreement to secure the entry of Gleevec for Guatemalan GIST and chronic myeloid leukemia patients was reached with the Central American country’s government July 10, following advocacy efforts by Novartis Pharmaceuticals, Alianza GIST and [...]
Alianza GIST and Oncoguia have formalized a new partnership to work together to benefit GIST patients in Brazil. The first goal of this partnership is to identify GIST patients in the different regions of [...]
A new clinical trial combining targeted therapy with immunotherapy has just opened at Memorial Sloan-Kettering Cancer Center (MSKCC). This trial is the culmination of extensive pre-clinical investigations by MSKCC researchers. Although treatment with Gleevec [...]
The Clinic is a collaboration between clinicians and researchers to collect data, investigate and develop treatment for Gastrointestinal Stromal Tumor patients who do not have either c-KIT or Platelet -Derived Growth Factor Receptor alpha (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). There are currently three clinical trials in development for this population.
A new gene panel takes mutation testing to a new level. The panel tests for mutations in 23 genes at once will help to properly classify wild-type GIST patients. Working with next generation sequencing [...]
By Jim Hughes Here are updates from the American Society of Clinical Oncology conference on three GIST clinical trials. Panobinostat (HDAC) Phase 1 in 3rd Line GIST: LRG research Team member Sebastian Bauer, MD of Essen University [...]
Trial investigators for the Global Phase 3 GRID trial reported that the Bayer Pharmaceuticals’ drug regorafenib (BAY 73-4506) has the potential to fill the unmet need for advanced GIST patients progressing after imatinib and sunitinib. [...]
As the Life Raft Group celebrates its tenth anniversary and the achievements within the GIST community over the last 10 years, we are busy planning for the future. Our focus remains the same – to cure GIST and support those people affected by this disease until we do. In addition to the services we currently provide, the LRG is working to develop new programs to support our members while also improving our advocacy initiatives to increase GIST awareness and treatment access. The LRG will also continue to fund our research team who recently completed a two year strategic plan to move forward based on its most recent findings.
One patient already contacted us when www.carneytriad.comwas just being launched. We were greatly astonished when a young woman with a complete Carney’s Triad contacted us via our website, as she happens to live only a 25 minute drive from Jasper’s city. What a joy and recognition!! Henriëtte and Jasper met immediately and she went for a second opinion to his own expert oncologist Dr. Winette van der Graaf at Nijmegen.
Since he turned 14, Jasper Smit of the Netherlands has been searching for patients like him. This is very difficult because Carney’s Triad is an extremely rare syndrome. Worldwide there are about 30 known patients with a ‘complete’ Carney’s Triad (GISTs, pulmonary chondromas, paragangliomas). Incomplete Carney’s Triad affects less than 100 patients in the world. This means that they have two of the three types of tumor (mostly GISTs and pulmonary chondromas). In his own words, here is Jasper’s story.
