Stats – they are interesting, but do not always relate to the individual. I’m now 53 years old and was diagnosed when I was 36. The stat for average age for a myeloma diagnosis is early- to mid-sixties. Five to ten percent of patients are under the age of 40.
I’ve been a football fan most of my life. I was five years old when I first saw the Minnesota Vikings play. I was hooked and have been for 48 years. Although the Vikings season typically ends in December (last time they were in a Super Bowl was 1976) this year, I have hope for seeing them play in January.
Currently, the Vikings record is 9-2 and looking good. The beginning of the season, the experts had them as a .500 team. That’s exactly why we can’t always go by statistics.
When I was diagnosed in 2000, I was told to get my affairs in order. Statistics for survival then were three to five years. Thankfully, I was directed to myeloma specialists right from the beginning, and I also had the support and resources from the International Myeloma Foundation (IMF).
My wife Robin has been working for the IMF since 2005, and we’ve had the honor of being part of the IMF’s Support Group Leader “ASH Team” since 2006. How time has changed! Those early years at ASH were interesting, but the stats were still pretty dismal for myeloma. There also were not that many abstracts for myeloma. I remember a printout about a page long for the entire ASH program for myeloma. It also did not generate as much interest or excitement.
The last 10–12 years in myeloma have been exceptionally exciting and growing! Some of the oral presentations are in halls that are the size of four football fields and hold tens of thousands of people. Not only do we have more treatment options than ever, but we now have options of IV, subcutaneous, and oral; each with less side effects and yes, good stats! I’ll never forget at ASH 2015, we had the “November to Remember” with approvals for Darzalex, Ninlaro, and Elotuzumab! Three major new options for myeloma patients! Earlier that same year, Kyprolis and Farydak were also approved! Now we’re talking amazing stats and response rates.
Today, there is more research than ever in myeloma and ASH is packed with five days of intense oral presentations, posters, educational sessions, scientific sessions, and much more! We now have to choose between simultaneous sessions.
So, as far as statistics, maybe this is the year my Vikings finally get to, and win, the Super Bowl; but more importantly looking back at statistics, I’m thankful to be here. This year, I am excited to see what the future folds for new treatments, combinations that work best for individuals, and updates on continuous therapy . . . at least until there is a cure!