As of December 31, 2010 the Life Raft Group’s Patient Registry has now accounted for 1,279 cases of GIST. The members of this registry have reported their clinical information to us as it pertains to their treatment of GIST. Of these 1,279 cases, we are here to report some key demographics that will help you understand who is a part of Life Raft Group GIST Community.
“I learned a lot and feel so much better having the NIH team as an additional resource, “said LRG member, Anne Pacifico.
Food and Drug Commissioner Dr. Margaret Hamburg today conducted an unusual one-on-one dialogue with leaders of approximately 60 patient organizations at a forum hosted by the National Organization for Rare Disorders (NORD).
The year 2010 is gone, an important year for the Latin American GIST Coalition. In 2010 the Monterrey Declaration was signed during the first summit meeting of the group. The group had the privilege of meeting the LRG research team, who works on a daily basis to find the cure for GIST.
The power and magic of the solidarity around me does not cease to amaze me! I remember having received the gift of airplane tickets to travel to my checkups from good people that I didn't even know, and I remember with immense gratitude the support of my family and friends who looked after my children while I was away.
At the American Society of Clinical Oncology Gastrointestinal (GI ASCO) Symposium January 20, 2011, researchers reported progression-free and overall survival benefit in newly diagnosed advanced GIST patients in an ongoing Masitinib (AB1010) Phase II trial in France.
Bayer initiates a randomized Phase III trial of Regorafenib in GIST: On January 10, 2011 Bayer Healthcare in Berlin, Germany announced the initiation of a randomized phase III trial of Regorafenib (BAY 73-4506) for Gastrointestinal Stromal Tumor patients.
A new year always brings changes. The only thing constant in the world is change. Being informed is one of the greatest ways to help alleviate confusion and stress during times of change, and can empower you to make the best decisions for you and your family. Below is a brief but straight-to-the-point description of Medicare in 2011.
“Dating with a GIST leads to two major difficulties,” says Estelle Lecointe, Pediatric GISTer and founder of Ensemble contre le GIST, “The first one being to announce the disease, the second one to explain the induced collateral damages and personal sacrifices. It’s very difficult to find the right time to bring these topics in the discussion as these aspects can be very scary for someone who’s never faced this kind of situation..."
The Gleevec for GIST story continues to remain one of the most successful stories in oncology. What could be better than a drug that works in 85 percent of patients? As great as this story is, there is room for improvement. Half of the patients on Gleevec for metastatic disease will progress in the first two years and 15 percent of patients are resistant to Gleevec right away or within the first six months of treatment. AROG Pharmaceuticals may have an option for a few of those patients.