In short, YES. It’s the only way treatment is advanced in diseases like multiple myeloma and has resulted in FDA approval of six drugs for myeloma treatment in the last 11 years...with more coming.  We don’t have a cure yet, but I’ve seen survival averages double, even triple since I was diagnosed 20 years ago.  And how did these therapies come about? Myeloma patients participating in clinical trials.

In short, there are three phases of clinical trials: I-determine maximum tolerated dosage; II-determines if the new treatment works; and III-compares new treatment to standard of care.  There are trials for all levels of myeloma patients...from solitary plasmacytoma and smoldering to newly-diagnosed to relapse/refractory patients of all ages.  Patients participating in clinical trials are monitored very closely for both treatment efficacy and side effects, which I always consider a benefit to patients.

I’ve participated in two clinical trials, neither of which worked for me. However, I’m still proud I was able to contribute to science, though—it’s the only way we are going to beat multiple myeloma. And new treatment options are so important. As a dear multiple myeloma friend once said, “Having multiple myeloma is like being a frog on a lily pad. At some point, the lily pad sinks, so the frog jumps to the next one.” Multiple myeloma patients need to be looking one or two lily pads ahead to find a place to float.

Some patients mention terms like “guinea pig” and “placebo.” Truthfully if being a guinea pig means you’re trying something that’s not necessarily standard, then that’s probably accurate.  However, drugs being tested have certainly first been tested in labs and then trials incorporate an Institutional Review Board as well as a Data Safety and Monitoring Board that provide initial and periodic review of trials to ensure human safety and measure interim results that protects patients.  And placebo would only be used in conjunction with the standard of care arm in Phase III.  For example, if Revlimid-Dex were the standard of care, it might be combined with either a new drug or placebo to determine if the new drug improves upon the standard of care.

So please consider clinical trials.  You can find them listed at www.clinicaltrials.gov as well as talk about them with folks at the IMF, MMRF, and LLS.  And watch Patient Power's interview with myeloma specialist Dr. Robert Orlowski as he shares his thoughts about myeloma clinical trials.

And, as usual, I'd love to hear what you think. Share your clinical trial experiences in the comments section of the blog.

Wishing you the best of success,

Jack Aiello