New Orleans, LA December 9, 2013 - Attending the American Society of Hematology (ASH) annual meeting as a patient is a hopeful, yet exasperating experience.
The current meeting in New Orleans is my fifth ASH. Ironically, the first ASH I attended was here, too. I remember being amazed by the size and scope of the event; so many working so hard to help blood cancer patients live longer.
Then as now, I found myself baffled by the dichotomy of research's progress. On one hand, you can almost feel the excitement in the air over the burgeoning development of immunotherapies and innovative, new pathways researchers can use to help destroy myeloma cells. On the other hand, doctors are still struggling with the most basic questions about when, with what and how much to administer to patients.
This would be understandable if I were referencing newly FDA-approved drugs like Kyprolis or Pomalyst. But I'm not. At the first event here at ASH, the International Myeloma Foundation's symposium, Critical Issues Need Answers: Providing Best Options for Myeloma Treatment in 2013, a panel of six world-renowned myeloma experts pleaded for more data about how to use Revlimid and Velcade. Revlimid and Velcade? They were approved seven or eight years ago! Did you know that Velcade is still not FDA-approved for use as maintenance therapy? Call the company and no one can tell you how often to dose patients post transplant, even though it has been used to treat patients now for over a decade.
Think of it this way. Drug company and academic researchers are frantically trying to discover the next, best thing. The result? Myeloma science is outpacing our doctors ability to apply it.
Going back and doing clinical trials to help doctors understand the "who, when and with what" isn't sexy. It's also expensive and sometimes difficult to enroll patients in trials. Many patients are more interested in enrolling in cutting-edge trials than how much dexamethasone works best with Revlimid or Velcade. But both types of trials are important for our futures and quality of life.
I'm looking forward to sharing both the hopeful--and more challenging aspects of ASH--over the next few exciting days here in New Orleans.
Feel good and keep smiling!