Navigating the ASH 2014 Myeloma Maze - Making It REAL For the Patient and Caregiver

Posted: Dec 17, 2014

When I was at one of the sessions that focused on the new exciting research which is being conducted on myeloma, I came to the realization that I was understanding less than 20% of what was being said. I gave the presenters 100% of my attention, and at some points I thought my head would explode. I saw people (researchers and scientists) in the room checking their cell phones, typing, and listening as well, and came to understand if much of what was being said is confusing to me, a relatively informed myeloma advocate, how is the newly diagnosed to sort through this Myeloma Maze? One way will be to listen to the Cure Panel Broadcast by Dr. Parameswaran Hari, one of my Great Eight of worldwide myeloma specialists. This will offer patients an opportunity to ask their questions to one of the very best of the best, and hear his perceptive of all of the research, clinical trials, and treatments presented at ASH. The broadcast will be at 5:00 pm EST on December 17th. For details on how to listen and ask your question CLICK HERE.

As patients, if you go to the abstracts from the ASH, I think you will get lost in this massive maze of information. Some of the best summaries by the IMF, MMRF, MyelomaCrowd, Cure Talks, and Myeloma Beacon are now available on line and provided by myeloma advocates as fellow patients themselves try to make their reports patient and caregiver friendly. All of these organizations send a number of patient advocates to attend and cover most all of the sessions. For example, my fellow Cure Panel members Jack Aiello, and Cynthia Chmielewski represented the IMF, and MyelomaCrowd had Pat Killingsworth, Lizzy Smith, Jenny Alhstrom, and myself. To read these patient friendly summaries from ASH 2014, the following sites would be my first choice for information.

Myeloma Crowd - ASH 2014 Highlights https://www.myelomacrowd.org/

IMF - The IMF 2014 at ASH, Support Group Leaders Perspective

MMRF - ASH 2014 Day One Roundup and Day Two Roundup Myeloma Cure Talks - ASH 2014 and many other great Myeloma BroadcastsMyeloma Beacon - ASH 2014 CoverageMyeloma Blogs of ASH - Living with Multiple Myeloma and Myeloma Survival Blog You get all of the new study data on the currently approved drugs Kyprolis and Pomalyst, as well as the yet-to-be approved new class of monoclonal antibody drugs Elotuzumab, Daratumumab, and SAR. In addition, new oral proteasome inhibitors of Oprozomib and Ixazomib offer the potential for an all oral treatment as a substitute for the current standard of RVD. The "V" is Velcade and is currently administered by IV or subcutaneous injection at the clinic. I will not go over that which has been so well covered by all of these exceptional myeloma advocates. Please take the time to visit each of the links above for a patient friendly tour though the ASH 2014 Myeloma Maze. The topic for my next blog post will be the exceptional research which looks to have a very positive result for high risk myeloma and some research which may finally lead us to a CURE for all patients, but seems to have flown under the radar.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments and you can follow me on twitter at: https://twitter.com/grpetersen1

about the author
Gary Petersen

Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1