I was recently saddened to learn about a myeloma patient I had seen in consultation many years ago, who, unfortunately, passed away from secondary complications at the age of 76, after 24 years of myeloma. An ASCT (autologous stem cell transplant) had really knocked out his myeloma, which was not a problem thereafter.
In his own words, he was a “Myeloma Warrior,” who had fought through difficult times—when treatment options were very limited—and had suffered unrelated complications along the way. He introduced the use of Freelite testing for disease monitoring at his treatment center and triggered a local educational process.
Evolution of Myeloma Warriors Across the US
Such are the stories of so many patients, who have searched out their own best treatment and given back to help so many other patients coming along behind them. As more and more local myeloma support groups have come together, the IMF has been proud to help with everything from organization to, most recently, the use of iPads to access, store, and distribute information. But the Warriors are those individual patients and caregivers who extend a welcoming hand back to those struggling to understand and cope with this crazy disease called multiple myeloma.
There are now over 150 myeloma support groups across the U.S. and each has its own personality, reflecting the commitments of the key members. The IMF Support Group Team is so honored to be able to help refine educational and support programs for these groups.
Myeloma Warriors for 2019
As patients live longer and so many more options become available, the Warrior process has become more sophisticated. Resilience, which I have discussed in detail, is needed to stay (or try to become!) strong and calm in the face of life-changing adversity, and to seek the educational tools to enhance decision-making. Sharing experiences, helping caregivers, and reading up on the latest details about immune therapies (such as CAR T cells or new bispecific monoclonal antibodies)—all get added to the to-do list.
The personal skill sets of individual patients and caregivers come into play . Some people are great organizers. Others, not so much. Then there are those who really research well and can figure out which new treatment options might be best, where they are available, and if those treatments are reimbursed through insurance.
The Warrior Philosophy
All myeloma patients need to seek a Warrior mentality—or perhaps find a buddy or caregiver who is the Warrior-in-Chief—in order to learn, to advocate, to work through the inevitable low points, and to see the light at the end of the tunnel that can lead to a long survival.
The outcomes in myeloma are improving dramatically. It is so important to become informed, and then, to stay updated in order to seek the very best immediate treatment. At the same time, it is essential to get top-notch general medical care (for blood pressure and cholesterol screening, etc.) to achieve the best quality of life.
Myeloma Warriors Extraordinaire
There are some Myeloma Warriors who also go out and fundraise for the IMF and its various programs. This IS truly extraordinary and really appreciated by all in the myeloma community. These 5Ks, golf tournaments, swims—and lemonade stands!— raise awareness about myeloma, as well as the progress being made in the search for a cure.
Think about becoming a Warrior or persuading someone to be your Warrior-in-Chief. If you can, join a support group. Or, if you prefer, seek out the information you need directly through your doctor or a second-opinion consultation to sort out the options. Know that in 2019, the search will be increasingly rewarding as more and more patients live not just for 5 or 10 years, but hopefully 20 years and beyond. Be that 20-plus-year survivor!
Dr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.