We are now hosting our ninth annual tournament. Plus, it is the 20th anniversary of me being first diagnosed with nonsecreatory multiple myeloma. Back in July 1992, no one would have predicted that I would still be alive after even one year, let alone 20. The life expectancy for myeloma patients back then was three years maximum; because my cancer was well advanced, the prognosis was even worse, 3 – 6 months.
Fortunately for me, my local oncologist had heard about a new experimental treatment program for multiple myeloma; devised by Dr. Bart Barlogie in Little Rock, Arkansas. After 5 courses of chemotherapy and two stem cell transplants, I went into complete remission by May, 1993. I remained in remission until August, 2000. The experimental treatment had prolonged my life, and is now the standard of care in myeloma. However, upon my relapse my first thought was, “now what”? The “now what” was surprising. In the ensuing seven years there had been a tremendous growth in research, partially supported by the Multiple Myeloma Research Foundation. That research increased our understanding of the disease, and this had led to the development of new, novel treatments. I responded well to one of them—thalidomide. By October of 2000 I was back in complete remission and remained in remission this time for 10 plus years. Last Winter I experienced my second relapse. As in 2000, the ensuing ten years had shown continued development in myeloma research and new treatments, particularly in the area of genetic analysis. We are at a point where we can match specific treatments to specific types of myeloma based upon one’s genetic profile. After a year’s worth of treatment that my genetic profile suggested I would be responsive to, with new novel agents including Velcade; I am back in complete remission.
The Multiple Myeloma Research Foundation has been at the forefront of leading the way toward that goal of finding a cure for multiple myeloma by funding research, raising awareness, and lobbying Congress to affect public policy. Through their efforts new novel treatments have been “fast tracked” through the FDA, and made available to patients years before they would have through the normal process. Each time that I have experienced a relapse there has been a new treatment or set of treatments available to me to fight the disease. Research supported by MMRF has saved my life and the lives of many others. Through their efforts the average years of survival from diagnosis have increased from three to well over seven years. There are some like myself who have been alive for over 15 years. In fact, this year we can all sing happy 20th!
But, there is still much more work to do. Some with “high risk” disease, including people that participate in this charity golf outing, haven’t been so fortunate. There are still subtypes of myeloma that do not respond well to any of the available treatments. Clearly, while this is an exciting time in multiple myeloma research and treatment, there is still much more work to do. I won’t feel really good until all types of myeloma can be successfully treated. This charity golf tournament is a small step to help in that effort. Because of your efforts we hope to be able to break the $200,000 mark in charitable giving to MMRF this year.
Thank you for your participation in this charity outing and doing your part in “golfing for the cure.”