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Exciting View from the ASH Mountaintop

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New Orleans, LA December 10, 2013 - I was truly honored to be among the multiple myeloma support group (SG) leaders invited by the International Myeloma Foundation to attend this year's American Society of Hematology (ASH) conference.  Inclusion of some SG leaders at ASH (as it's called) has been done annually for a number of years, thanks to funding grants provided by the pharmaceutical industry.  The experience is an inspirational educational event for the leaders.  I liken it to going to the mountaintop, the annual "peak" of myeloma research reporting, from which the view this year is very exciting indeed.

This was the second ASH conference I have attended.  The first was in 2007, shortly after our Southeastern Virginia Multiple Myeloma Support Group was formed with the help of the IMF.   As Robin Tuohy, currently IMF's Senior Director of Support Groups, said in an interview back then regarding helpful IMF information on myeloma:  "The more I learned the more I felt empowered."   The same is true of the ASH experience.  The reports and professional discussion about promising new treatments educate SG leaders and give us great hope.   "Knowledge is power," as the IMF says.

Another benefit of SG leaders attending ASH is inclusion in the worldwide myeloma "team" created by the IMF.  That team includes doctors and researchers who participate in the International Myeloma Working Group, doctors who treat myeloma patients, members of the IMF's Nurse Leadership Board, the wonderful IMF staff, SG leaders, and the object of the team's efforts and existence - myeloma patients.  Team members have the opportunity to communicate with and learn from each other during ASH, thanks to productive events orchestrated by the IMF.  These events include myeloma survivors telling their compelling stories, the welcoming of new medical professionals to the team as they are given grants for promising myeloma research, and other events.

The first ASH conference I attended helped me to become a more informed SG leader.  Hearing expert presentations and learning the clinical trial methodology and vocabulary enabled me to digest future technical reports on myeloma research.  ASH participation also connected me more closely with the IMF staff and with experienced SG leaders with whom I could communicate for additional information and advice.  

This year's conference reinforced all of that and helped to provide a clear view of the horizon from the ASH mountaintop.  The abundance of 800+ detailed technical reports was initially intimidating.  Dr. Durie's informative preliminary guidance helped us to focus on topics that were particularly noteworthy.  And IMF's video interviews of participating myeloma experts provide excellent perspectives on ASH highlights.  For example, Dr. Morie Gertz of Mayo Clinic describes an exciting view:  he says that new drugs in the pipeline will continue to push the envelope and improve the prospect for patients with multiple myeloma so that functionally, they'll be cured.  And Dr. Kenneth Anderson of Dana-Farber echoes that view in his video on the IMF website, saying "cure remains very close on the horizon".    Here's hoping we'll soon be seeing that pot of gold at the end of the rainbow.

Jerry Walton
Southeastern Virginia Multiple Myeloma Support Group
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There was a huge turnout Friday at the American Society of Hematology (ASH) conference session on Best Options for Myeloma Treatment. Nearly a thousand medical professionals attended. Myeloma experts from around the world addressed and debated best treatments for myeloma at various stages of the disease.  

A key focus was emphasis on the need for more detailed data on myeloma to clarify various subtypes and tailor treatments accordingly. Robin Tuohy of IMF and Cindy Chmielewski of the Philadelphia Myeloma Networking Group hit the nail on the head with their tweets:  "Myeloma is not one disease" and "Myeloma is a heterogeneous disease. It's not one size fits all," respectively.  As Dr. Vincent Rajkumar of Mayo Clinic said, one of the biggest problems in multiple myeloma is that we don't have adequate definition of subtypes yet. We need to get more specific--to clearly define those categories of myeloma that are responsive to particular medications, such as immunomodulatory drugs (thalidomide, lenalidomide, pomalidomide) and other drug types.

IMF's Black Swan Research Initiative® and its effort to develop tools that will measure minimum residual disease (MRD) will help immensely in this effort.  Bottom line:  myeloma experts here are very excited about new and emerging treatments, and they want to maximize their effectiveness by aiming them at the right targets --hopefully someday leading to cures for the disease, in all of its subtypes. 

-- Jerry Walton