With few exceptions, most myeloma specialists don’t believe that our cancer can be cured using therapy options available today. These exceptions include a small percentage (5-10%) of allogeneic (donor) transplant recipients, and possibly some low risk, Total Therapy grads from Arkansas. Any others are considered outliers; rare exceptions that don’t fit the norm.
Five years cancer free? Ten years? This would be great news for most solid tumor cancer survivors. But often, myeloma works in reverse; the longer you live, the more likely you are to relapse. That’s why I have trouble jumping on the “I’ve been myeloma free for seven years; I’m cured!” Bandwagon. I personally know a half dozen allo transplant recipients that relapsed, even after ten years.
My good friend, fellow myeloma survivor and blogger, Nick VanDyk, doesn’t agree. A UAMS/MIRT patient from California, Nick travels all the way to Arkansas to be treated by the controversial myeloma specialist, Dr. Bart Barlogie. At UAMS, low risk survivors that have been cancer-free for ten years are considered cured.
But how can anyone really know? Well, Black Swan founders, Dr. Brian Durie and the Dr. Ola Landgren believe they have found a way to tell. I touched on this yesterday. According to the IMF, “the Black Swan Research Initiative is developing ultra-sensitive tests to accurately measure Minimal Residual Disease and define its absence as a cure.” The group, made of of Dr. Durie, Dr. Landgren and a yet to be revealed handful of highly respected, international specialists, have christened the absence of minimal residual disease as MRD-Zero.
Fair enough. But like me, many of my friends and contacts in the myeloma community were a bit disappointed by this emphasis on testing for MRD. I guess I expected some exciting news about new therapy combinations; that by using the right combinations-and in the right order–Black Swan docs had made significant steps toward a cure.
Having thought about it for awhile, the group’s premise does make sense. You can’t cure something you can’t measure, right? And my friends at the IMF assure me that Black Swan “operatives” are great multitaskers; they’re working on the drug combination and timing thing, too.
Enough with introductions and review. Tomorrow I will share Dr. Durie’s answers to some of our reader questions. Questions that were so specific and technical it took a while to get the answers back from Dr. Durie; he’s a very busy man. I sure wish that I had his frequent flyer miles; back and forth between conferences in Europe and Asia, as well as speaking to groups all across the U.S.
Feel good and keep smiling! Pat