The 2015 GIST Days of Learning Tour continues to be successful. A GIST Day of Learning (GDOL) is a free, one-day program that provides both education and support to the GIST community. Medical professionals who have specialties in GIST cancer give presentations on issues relevant to their fields of expertise. GDOL’s provide an opportunity not only to meet and interact with local expert practitioners in an intimate setting, but also for patients to connect with one another in a supportive environment.
On the evening of Tuesday, April 14, the Lurie Cancer Center of Northwestern University Medical Center in Chicago, Illinois played host to the second stop in the nationwide GIST Day of Learning tour schedule. Sixty-five GIST patients, caregivers, family members, physicians and medical staff attended the event.
Speakers for Saturday’s event included Mildred Menos, Assistant Program Director at the Life Raft Group, who emceed the event and spoke about the varied services, resources and projects the Life Raft Group is involved in. LRG volunteer Clinical Trials Coordinator and Illinois state leader, Jim Hughes, briefed the group on the clinical trial resources page he maintains on the LRG website as well as the website he runs for the Chicago GIST community to keep in touch (GISTChicago.org). Expert medical presentations were provided by clinical oncologist Dr. Mark Agulnik, surgeon Dr. Jeffrey Wayne and Oncology Fellow Dr. Nisha Mohindra. After the presentations, the doctors sat on a panel, fielding questions directly from the audience. A topic of particular interest was the factors that went into determining the best dosage and treatment for a patient. The team at Northwestern believes that although Sutent is commonly referred to as the “second line of treatment”, adjusting Gleevec dosage is often just as effective, serving as the “second line in practice.”
In addition to the session’s speakers, the meeting featured hosted tables by Lurie’s Patient Navigator program Pfizer Pharmaceuticals, who were on hand to provide literature and answer questions. Participants also took part in the LRG’s newest awareness campaign, #ShowUsYourRare, by taking photos highlighting what made them “rare”.
Next Stop: Miami GDOL
The next stop was Miami, where on Saturday May 16th, The Life Raft Group hosted a GIST Day of Learning at Sylvester Comprehensive Cancer Center.
Dr. Jonathan Trent provided opening remarks and shared information about the expert multidisciplinary team at Sylvester Comprehensive Cancer Center, a key center of excellence servicing the GIST community. He also highlighted some interesting clinical trials that his Center has open for GIST patients.
Dr. Breelyn Wilky, an oncologist at Sylvester, unraveled complex science information about GIST and provided tips on side effects management. The next speaker was new to the GDOL conference but not new to Sylvester. Lisa Marie Merheb, LCSW, an oncology social worker, spoke about her role in helping patients and their families navigate strategies to get additional support and strategies to cope with the psychosocial implications of cancer. Dr. Pablo Bejarano, a pathologist from Cleveland Clinic Florida, and Dr. Alan Livingstone, surgeon at Sylvester, then provided expert medical presentations. Participants were able to understand the importance of mutational testing as well as the incredible value of the surgeon’s role at different stages of disease.
The last session was a Question & Answer Panel that provided participants an opportunity to ask questions to the medical team. Recurrence was a major topic of discussion. Whether someone is new to the disease or a long-term survivor, it is an issue that permeates many peoples’ minds. We are thankful to the medical professionals present that day who instilled a level of confidence that patients are in good hands at Sylvester.
The LRG is thankful to sponsors Genentech, Novartis, and Pfizer for helping to support this important gathering of patients and their families in Miami. We extend an additional thank you to Adrienne and Jeff Davis for volunteering to do registration. Thank you, also, to Donald Edgar for photographing our meeting. To view Donald’s work, please visit donaldedgarphotography.com.
If you are interested in having the LRG come to your city for our next GDOL, email your ideas to Laura Occhiuzzi at firstname.lastname@example.org.