New Orleans, LA December 10, 2013 - For the last three years, I have been fortunate to attend the ASH meetings through a special educational grant to the International Myeloma Foundation. The IMF program is a first of its kind to educate several support group leaders/patients, who then in turn take information back to their groups. As a support group leader in Kansas City, the ASH experiences have been extremely valuable for me as well as the other members of our group.
Being diagnosed with myeloma is a major life-changing event. Once myeloma is brought into your life, you are never the same. It is the constant that walks with you throughout the rest of your life, sometimes quietly staying in the background, but ever-present.
When newly diagnosed patients contact me, they are hungry for information and support. After listening to their story, I assure them that many others are living full and active lives, all while walking the myeloma pathway. Knowledge is power and the IMF does an excellent job of providing patients with all the tools they need to understand their disease. I always suggest they begin by contacting the IMF hotline, an excellent way to start their myeloma education.
I am not a medical professional, but through my attendance at ASH, I can offer our members hope and encouragement as I relate information on newly developed therapies. Each year has brought new and exciting developments.
For example, this year at ASH, I had the good fortune to meet a myeloma survivor who, having been diagnosed with stage III myeloma and given a short time to live, chose to spend her remaining days enjoying life rather than submitting her body to the rigors of a transplant.
She agreed to participate in a clinical trial using MLN-9708. The response was outstanding as she achieved complete remission. This does not mean that myeloma is out of her life forever, but it buys her more time until some other drug comes along. It is also a wonderful example of the power of clinical trials for those who may not have otherwise considered participating.
I have been humbled by the dedication and commitment of the many brilliant minds working toward a cure for myeloma. Their passion will help forge the way in continuing the advances in myeloma research. I also deeply appreciate the IMF for the opportunity to attend ASH and for everything it does to support, educate and make life better for myeloma patients until there is a cure.
Kansas City Support Group Leader