The Myeloma Crowd launched its Round Tables on High-Risk Disease program in Salt Lake City, UT on Saturday, May 7, 2016. Host Dr. Rafael Fonseca of Mayo Clinic Scottsdale was joined by Dr. Guido Tricot of the Holden Cancer Center at the University of Iowa and Dr. Djordje Atanackovic of Huntsman Cancer Institute at the University of Utah.
A full house took in lectures centered on relapsed disease as well as high-risk disease issues, which as studies in disease progression demonstrate, a majority of myeloma patients will encounter. Each session of lectures was followed by a one hour Round Table in which the faculty commented on each others’ presentations and took questions from the audience.
Dr. Fonseca started off the day with an introduction into the genetics of myeloma and high-risk disease, linking it to treatment strategy. His analogy of the Lion (drug therapy) and the Gazelle (myeloma) simplified the process in understandable terms. Current lines of attack focus tend to eliminate the slower, “dumber” myeloma cells while the others become smarter and stronger. Therefore, future therapies must get better at killing the smarter, faster cells from many angles.
Dr. Tricot commented that “this was the most engaged audience” he experienced in “all of the patient meetings” in which he has participated. In addition to providing an overview of recent studies, Dr. Atanackovic shared some of his own unpublished research on treating new molecular targets in myeloma.
Some of the key points raised in Salt Lake City included:
The Round Table attendees covered a spectrum that included smoldering to active myeloma patients who appreciated the chance to ask their most important questions directly to a group of myeloma specialists.
“This Round Table will directly affect my wife’s decisions on treatment going forward,” said one attendee.
Another commented, “This was incredible opportunity to speak with multiple specialists in one setting as well as meet and connect with other patients and caregivers.”
"Although I consider myself knowledgeable, I learned as much from the questions as from the presentations. Myeloma is a scary, big disease and it’s a lot easier to go on vacation and try to forget the whole cancer thing. But ignoring reality isn’t going to help; in fact, it will likely hurt. So getting informed and developing an action plan is more than prudent. I feel hopeful after having listened to the experts and my fellow patients. I have a great doctor, there are new drugs I have not tried and more coming, I’m still alive, and I plan to be around for a very long time," said Lizzy Smith.
We encourage you to attend future Myeloma Crowd Round Tables. The next two will be in St. Louis (June 18) and Boston (June 25) and will feature different expert panels. Three more will be scheduled around the country this fall. Keep your eyes open and attend one or more as the topics will vary for each meeting.
As Dr. Fonseca noted, medicine is changing because patients are demanding it. The Myeloma Crowd Round Tables help educate patients to know what to demand.
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about the author
Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years, where he inaugurated the public policy advocacy program, patient support group outreach and IMF Europe, organizing more than 100 physician and patient education programs. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.