Last Friday, the Dana-Farber Cancer Institute in Boston hosted a symposium for patients diagnosed with Gastrointestinal Stromal Tumor (GIST) and their families. The all-day event, “Living with GIST”, was not only informative for GIST patients, but was also a celebration. The event marked the ten-year anniversary of finding a successful treatment for GIST.
GIST is a rare type of cancer that affects the body’s digestive tract and its nearby abdominal structures. Unlike the majority of cancers, which are carcinomas, GIST tumors are sarcomas and do not respond to chemotherapy or radiation therapy. As Dr. George Demetri explained to the audience, prior to the development of effective treatments, GIST tumors were surgically removed until it was no longer clinically effective to do so. The development of molecular targeted therapy, such as Imatinib (Gleevec) and Sunitinib (Sutent), changed the prognosis for GIST patients, bringing hope where there had been none.
Dr. Demetri and his colleagues shared the joy of the early days of the Imatinib clinical trials, when they saw the previously untreatable cancer tumors shrinking and stabilizing after short trials of drug therapy. The enthusiasm of Dr. Demetri and his colleagues, combined with the stories of hard work and barriers overcome, spoke to the amazing accomplishments of these medical professionals.
Also present at the GIST symposium were patients from the original Imatinib trials whose amazing stories provided hope to the other GIST patients in the audience. One young mother relayed how she was on hospice with little hope of survival when she was accepted into the clinical trials. Over ten years later her GIST remains under control and she has become a strong advocate for her fellow GIST survivors.
Another man had undergone several surgeries for his GIST and was told if he survived even one more year he would be lucky. But after starting on molecular targeted therapy he has lived over ten more years and is still going strong. Many more similar stories were told, giving those recently diagnosed with GIST hope that their rare tumors could be controlled.
However, amidst these stories of medical miracles, GIST patients remained aware that the road to a final cure is not complete. GIST patients can become resistant to Imatinib or Sunitinib, the only two FDA approved GIST drugs on the market. And because GIST patients typically need to remain on these drugs to keep their tumors in check, new drugs must constantly be developed. Also, some forms of GIST respond better to the current drugs than other forms of GIST, meaning that additional forms of drug therapy must be developed to treat those types of GIST tumors.
The remainder of the symposium focused on providing information to patients and their families on how to live with GIST. Panels of therapists, social workers, nutritionists, message therapists, and other professionals spoke about different ways to optimize your care while being treated for GIST. In addition, Dr. Judy Garber and Dr. Katherine Janeway addressed GIST patients’ concerns about the role of genetics in GIST, stating that current research does not support a strong genetic link in most GIST cases.
The helpful information shared amongst GIST-diagnosed patients and counsel of the Dana Farber Cancer Institute staff combined to create a web of support for those in attendance. All in all, “Living with GIST” was an informative symposium looking back at the progress made in GIST treatment and providing hope for the future.
And for Chicago residents diagnosed with GIST, the University of Chicago specializes in GIST treatment and is also involved in GIST clinical trials to develop new forms of treatment.
Kreisman Law Offices has been handling Illinois failure to diagnose cancer lawsuits for areas in and around Cook County, including Chicago, Cicero, Naperville, and Schaumburg.
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