“I had a lot of unknown questions answered today. Very helpful, very worth my time” – an attendee of the 2018 St. Louis Myeloma Crowd Round Table
Myeloma Crowd Round Tables are live “graduate level” patient education meetings that provide opportunities for attendees to learn and ask questions from some of the top myeloma experts in the world. The Myeloma Crowd has hosted 18 events in the past three years. The fact that there is a need for next-level patient education is a testament to the rapid, promising advances being made in myeloma research and treatment. Although no consensus exists that myeloma is now curable, it is inarguable that the majority of patients diagnosed today will have significantly longer survival rates than those diagnosed a decade earlier. And that makes patient education more important. Good information seems to be coming out every day and it is conveyed in different ways: articles, tweets, Facebook, video and audio from a wide spectrum of sources. The hard part for lay persons is the scope, variety and timeliness of the information and how it applies to your interests. There are generally two categories of patients: newbies and veterans. In the early days of patient education, most information was one-size-fits-all, so the difference didn’t matter much when it came to treatment choices. Newbies tend to be in shock and scared at the time of diagnosis, hoping for a “magic bullet” cure. Veterans accept that their disease is not necessarily the end of the world, they will live with this disease and how it brings “gifts” (sarcasm alert) of different side effects and continuous decision-making about changing treatment options. Myeloma Crowd Round Tables are designed primarily for veterans, but newbies or family members with an interest or background in science should feel welcome to attend. Each Round Table is unique, focusing on the strengths and interests of the particular speakers. As an attendee of the 2018 Baltimore Myeloma Crowd Round Table commented, “This was not ‘Myeloma 101’ – it was very advanced [and] I would definitely attend another one.” The topics cover issues related to high-risk, relapsed and refractory disease. If you attend, you will learn about the importance of knowing and understanding the genetic characteristics that differentiate treatment strategies. You will learn how to plan for a future in which the nature of your myeloma will change with each treatment regimen and some options about how to deal with each one. Round Tables also feature two extended question-and-answer sessions to allow attendees to ask questions and perhaps learn about differing approaches to similar issues as the faculty discuss your questions among themselves. Topics also speculate about realistic treatment expectation in the foreseeable future. Back when the average survival rate for myeloma was three-to-five years, patient education focused little on what might be coming five-to-ten years down the road. But most of today’s newly diagnosed patients can realistically look forward to accessing treatments in the future that are not approved or available now. As Brian McMahon of SparkCures has stated, patients now also have to think strategically about participating in clinical trials. If, for example, you are considering participating in a future clinical trial for CAR T cell therapy, there may be certain trials attractive to you today that could make you ineligible for a later CAR T trial. This year the Myeloma Crowd started to record its meetings and making them available on the website. You can click the following links to see Round Table presentations in St. Louis, Baltimore, Charlotte, New York and Buffalo. The video from the Scottsdale Round Table on November 17, 2018 will be posted soon. The Myeloma Crowd will conduct six Round Tables in the coming year. Please check the website for updates on timing, locations, and diverse speakers and topics. Speakers who participated in one or more of the 18 Round Tables held so far include:
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.