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Thursday, September 15, 2011

MMRF Patient Symposium

I have been mildly chided by some of my blog followers for the absence of any updates for the past week.  Mea culpa.  You have to understand that even great writers occasionally have writer's block.  Maybe even Stephen King, although I can't imagine his blocks lasting for more than several minutes.

Last Friday, Gretchen and I attended a Patient Symposium at the Westin Copley Hotel sponsored by the Multiple Myeloma Research Foundation (MMRF).  Dr. Richardson chaired the symposium, and there were presentations from doctors around the country.  It was extremely informative and gave us an opportunity to meet some other MM patients and their families.

Particularly impressive was the tremendous amount of research being done on this disease.  There are over 30 clinical trials now underway testing 19 new drug treatments for MM.  Over the past few years, there has been amazing progress in understanding the mechanisms of MM and finding multiple drug combinations to combat it.  It was quite encouraging to realize that I am benefiting from all this research, including the clinical trial in which I am now participating.  The next few years may bring even more breakthroughs, as they strive to achieve not only longer remission times, but an actual cure for MM.

Dr. Richardson hosted a breakout session at the end of the conference on side effects.  It was interesting to learn that one of the most common and troubling side effects of some of the MM drugs, such as Velcade, is peripheral neuropathy (PN).  PN symptoms often include numbness, tingling, and pain in the hands and/or feet.  While there are palliative treatments, such as skin creams, sometimes the effects of PN can be irreversible, even after cessation of the drug treatment.  I am somewhat familiar with PN symptoms , having suffered with carpal tunnel syndrome for many years.  It was quite uncomfortable.  Fortunately, I had successful surgery a few years ago, which returned normal feeling to my fingers.

It was gratifying to discover that my oral experimental drug, MLN9708, designed to replace the intravenous Velcade, does not seem to trigger this side effect.  So far, I have had no symptoms of PN.  This is just one more reason that I feel particularly blessed to be involved with this clinical trial.

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