From time to time my readers and I reference allogeneic (donor) stem cell transplants as a potentially long term therapy fix for multiple myeloma–and possibly even a cure. The procedure is considered experimental and can be very dangerous. So much so that Medicare currently will not pay for one of these transplants in a myeloma patient.
Here is a link to an interview blood cancer survivor, Andrew Schorr, did with allo expert, Dr. Craig Hofmeister, recently for one of his Patient Power broadcasts. In it, Dr. Hofmeister discusses allogeneic transplants and explains why they aren’t commonly preformed:
Allogeneic Transplant for Multiple Myeloma
Listen. There are lots of reasons for a myeloma patient not to undergo an allo SCT. But I am intrigued by them, as have been BMT clinicians for decades. Because in theory, these darn things should work!
Unfortunately, often they don’t. But sometimes they do! I have several very long-lived myeloma survivor friends that have undergone the procedure. Sometimes people “get lucky” and live with multiple myeloma for many years with little explanation as to why. But more often than not it is because that survivor and his family have been willing to roll-the-dice and be exceptionally proactive.
Allos aren’t supposed to be effective salvage therapies. Yet my good friend, Dr. Arnie Goodman, underwent one last August as an extremely last resort. It was successful, and he is still alive and, according to Arnie, “enjoying a good quality of life” today.
One of our regular readers, Mark, had an allo SCT early-on following his diagnosis. He is a strong advocate of the procedure when used proactively and early. Well known myeloma advocate, Ohioan Jim Bond, recently underwent an allo after battling 20 years of myeloma and is doing exceptionally well.
I interviewed dozens of allo transplant patients while I was writing my book, Stem Cell Transplants from a Patient’s Perspective. I can tell you first hand, allos are no picnic! And with death rates still hovering around 10%, they are extremely risky, too. But while researching my book I found that there is also a 10% chance of a long term (10 years or longer) remission or cure.
Are you feeling lucky?
Would I consider undergoing an allogeneic stem cell transplant if and when I run out of other therapy options? Yes. Getting doctors to agree to do one–and making the decision to proceed–is another story.
But like the University of Arkansas Medical Center’s (UAMS) aggressive Total Therapy, I believe it’s important to get information out about a variety of different myeloma therapy options, even if I wouldn’t necessarily chose one myself.
Feel good and keep smiling! Pat