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    • Life With Multiple Myeloma
    • Dec 18, 2018

    Day 8 of Myeloma Giving: Sharing the Gift of Myeloma Crowd Round Tables and Live Patient Education

Day 8 of Myeloma Giving: Sharing the Gift of Myeloma Crowd Round Tables and Live Patient Education 

From December 10 – 21, the Myeloma Crowd is sharing 12 Days of Myeloma Giving. Please share this post and invite your friends and family to participate. Each day we will share something you can give to lift others. These gifts will save lives, lengthen lives and makes lives happier and more meaningful – maybe even your own.

“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:

  • Samuel Achilefu, Washington University, Center for Multiple Myeloma Nanotechnology
  • Djordje Atanackovic, University of Utah, Huntsman Cancer Institute
  • David Avigan, Beth Israel Deaconess Hospital
  • Ashraf Badros, University of Maryland, Greenebaum Cancer Center
  • Leif Bergsagel, Mayo Clinic, Scottsdale, AZ
  • Divanya Bhutani, Columbia University Medical Center
  • Wolfgang Blau, Charité Hospital, Berlin, Germany
  • Ivan Borrello, Johns Hopkins University School of Medicine, Sidney Kimmel Cancer Center
  • Thomas Bumm, University of Würzburg, Germany
  • Adam Cohen, University of Pennsylvania, Abramson Cancer Center
  • Craig Cole, University of Michigan
  • Faith Davies, University of Arkansas Myeloma Institute
  • Hermann Einsele, University of Würzburg, Germany
  • Rafael Fonseca, Mayo Clinic, Scottsdale, AZ
  • Morie Gertz, Mayo Clinic, Rochester, MN
  • Irene Ghobrial, Dana-Farber Cancer Institute
  • Jens Hillengass, Roswell Park Comprehensive Cancer Center
  • Craig Hofmeister, Ohio State University Comprehensive Cancer Center, The James
  • Michael Hudecek, University of Würzburg, Germany
  • Martin Kortüm, University of Würzburg, Germany
  • Shaji Kumar, Mayo Clinic, Rochester, MN
  • Robert Kyle, Mayo Clinic, Rochester, MN
  • Oscar Lahoud, Memorial Sloan Kettering Cancer Center
  • Ola Landgren, Memorial Sloan Kettering Cancer Center
  • Suzanne Lentzsch, Columbia University Medical Center
  • Sham Mailankody, Memorial Sloan Kettering Cancer Center
  • Markus Mapara, Columbia University Medical Center
  • William Matsui, Johns Hopkins University School of Medicine, Sidney Kimmel Cancer Center
  • Philip McCarthy, Roswell Park Comprehensive Cancer Center
  • Gareth Morgan, University of Arkansas Myeloma Institute
  • Dietger Niederwieser, University of Leipzig, Germany
  • Ruben Niesvizky, Weill Cornell Medicine
  • Noopur Raje, Massachusetts General Hospital
  • Donna Reece, University of Toronto, Princess Margaret Cancer Centre
  • Ran Reshef, Columbia University Medical Center
  • Paul Richardson, Dana-Farber Cancer Institute
  • Keith Stockerl-Goldstein, Washington University School of Medicine, Siteman Cancer Center
  • Monica Shokeen, Washington University, Center for Multiple Myeloma Nanotechnology
  • Gernot Stuhler, University of Würzburg, Germany
  • Guido Tricot, University of Iowa, Holden Comprehensive Cancer Center
  • Saad Usmani, Levine Cancer Institute
  • Brian Van Ness, University of Minnesota
  • David Vesole, Georgetown University Hospital/John Theurer Cancer Center, Hackensack, NJ
  • Ravi Vij, Washington University School of Medicine, Siteman Cancer Center
  • Peter Voorhees, Levine Cancer Institute
  • Jeffrey Zonder, Wayne State University, Karmanos Cancer Institute

About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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