All Hail #MyelomaWarriors

Yelak Biru |

The International Myeloma Foundation kicked off the 2018 March Myeloma Action month with the focus on the #MyelomaWarrior. On the plane I was on from DFW to SAN to attend the 60th American Society of Hematology Annual Meeting & Exposition held in San Diego from December 1 – 4, 2018, there was a Warrior, in all its true sense, that had earned a purple heart. Not just 1, not just 2, but, 3 purple hearts. Knowing that purple hearts are given to those injured in the line of duty, and in the U.S., you choose to be a solider and fight on behalf of those that can’t or to defend the constitution and for which it stands, it was humbling that this person chose to go to war 3 times on our behalf.

Weather you choose to be a #MyelomaWarrior or dance in the rain, it was humbling to see firsthand at #ASH18 the amount of work that goes to help those that become myeloma warriors, not by choice but by almost natural selection or circumstance in our cases.

There were many takeaways for all of the 12 myeloma support group leaders. You can read their blogs, here, and you can follow their tweets here. Here are some of mine:

  1. Relationships are important: At the meeting, I was able to see and connect with my consulting myeloma expert, current local hematologist, and my previous one from the Dallas area. As choices increase, increasingly the next best treatment for you will be influenced by your relationship with your physician and their understanding of you Quality of Live (QoL) requirements as well as social and economic constraints. So, relationships that help inform your doctor are important!
  2. Best early: From the IMF Satellite Symposium to Twitter battles, to post ASH Blogs by Brian Durie, there seems to be “general” agreement that using the best options early seems to gain some level of momentum, consensus. But, there is no, at least not yet, consensus as to what that best treatment should be. Especially in international and developing countries where some of the novel therapies are yet to be available, there is no good consensus of best. Hence, point #1 above is important.
  3. MRD on the main stage: Minimal Residual Disease (MRD) used to be discussed as “only in the setting of clinical trials” a year or two ago there were even debates happening at the International Myeloma Working Group (IMWG) conference meetings when one should engage with a patient about MRD testing. This year, it was clear that MRD will soon start guiding, directly or indirectly, one’s treatment course. It was clear that MRD negativity is preferred in general, but, how you get to MRD negativity seems not to be as important. It is not clear yet, at least to me, if MRD negativity, sustained MRD negativity, plays a role in high risk patients. i.e. if it implies overcoming the high-risk markers or if it translates to longevity.

Dr. Ken Anderson interviewed Tom Brokaw during one of the educational sessions. Tom mentioned that his curiosity as a journalist also helped him asks all the relevant questions to understand his options and next actions. Tom attributed being able to quickly integrate myeloma into his life to surrounding himself with specialists, creating a great support system, and using his influence to ask for help. He now uses that influence to open doors for others. Some patients were able to get a photo with Tom after the session.

Dr. Ken Anderson, Tom Brokaw, and multiple myeloma patients at 2018 American Society of Hematology annual meeting and exposition

Dr. Ken Anderson, Tom Brokaw, and multiple myeloma patients attending ASH 2018

Don’t forget to register for the Best of ASH Teleconference scheduled for January 10, 2019. Dr. Durie will summarize the conference in terms that is understandable for patients. You can also ask difficult questions during this time.

 

 

Whether you are a #MyelomaWarrior or a dancer in the rain, I wish you the courage and wisdom needed to dust yourself up, get up and get ready for the next war. Or rain! 😊 I wish you a happy holiday season and hope to bring you back more information from the 61st ASH which will be held in Orlando, FL.

Yelak @NorthTxMSG

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