Dan Vaella was instrumental in getting Gleevec to market. After 25 years at Novartis and Sandoz, he has chosen to step down as Chairman.
After two years of planning, toiling, and more planning, the LRG unveiled its redesigned website on January 1 at our same web address: liferaftgroup.org. Finding the balance between providing life-saving information and explaining GIST in a concise, understandable way, has always been a struggle for the Life Raft Group.
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.
Access issues come up often enough in America. Depending on the disease, many times there are agencies or organizations in place to help patients in need overcome these hurdles. Outside of the United States, it is not always easy or even difficult to access treatment for a rare cancer. It can be downright impossible. Factors like cost, patient population, and bureaucratic red tape can lead to restrictions on a patient’s ability to afford or even get a prescription for drugs like Gleevec, Sutent and others.
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.
The perilous world of dating can become even more complicated when you are living with cancer. This article is the second in a two part series on dating with a diagnosis of GIST. Part one, which was published in the February 2011 issue of the LRG newsletter featured experiences from three GIST survivors, Jason DeLorenzo, Eric Tan & Estelle Lecointe on the difficulties approaching the subject of GIST while dating. Part two covers tips on approaching the subject, a success story and new ways to meet people.
“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..."
Yesterday, there were a series of news stories reporting on an article published by Cooke et al inCancer Cell. Unfortunately, the coverage gave misleading information which could suggest that patients should not take Gleevec (imatinib) or Sutent (sunitinib).
EU Cancer Patients Concerns Heard: Cancer Patient Mobility Moves Closer to a Reality. The following article was taken from a European Cancer Patient Coalition press release. A “yes” vote in the European Parliament’s public health committee [on October 27, [...]
This December, I will have been working with cancer patients for six years at the Life Raft Group. I have held their hands in hospital beds, coached them on how to talk with their doctors, stood by their side at the weddings of friends, walked with them through haunted houses and comforted their loved ones when they had nothing left.