When I was first diagnosed back in April, 2007, I was told by my Mayo Clinic specialist that I had no concerning genetic prognostic indicators.  In other words, I was a low risk multiple myeloma patient.  But this spring I learned that had changed.

Sometime between 2007 and 2011, my myeloma showed a significant shift.  No one told me about it; I noticed the change while glancing at a post transplant report in my file prior to meeting with Dr. Melissa Alsina, my specialist at Moffitt Cancer Center in Tampa, Florida.

Honestly, I didn’t give it much thought.  Regular readers know I don’t put as much stock in genetic indicators as some.  My view: low risk, high risk; we’re likely to use most all available myeloma therapies before we’re gone.  Sometimes the drugs that are supposed to work don’t, and those that aren’t supposed to work do.  I may be living proof of my theory.

I mistakenly believed that I had developed a t(4;14) chromosomal translocation following my autologous stem cell transplant in July of 2011.  Organizing my office in our new Fernandina Beach, Florida home Sunday, I discovered a copy of the report that I had noticed in May.  It turns out I was wrong on both counts.

I’m not a t(4;14).  I’m a t(11;14).  And the genetic change didn’t occur post transplant; it happened sometime prior to that.

What are the implications?  I think it’s unclear.  Overall survival numbers are 20% or so worse for patients with a t(11;14), the most common myeloma translocation.

But I’ve already outlived the median OS number for t(11;14) by almost three years.

My understanding is that proteasome inhibitors–like Velcade and Kyprolis–whould work better than IMiDs (Thalomid, Revlimid, Pomalyst) for those of us with t(11;14).  Yet Velcade barely worked for me.  Conversely, Rev has worked so well over the years that my new specialist, Dr. Roy at Mayo Clinic, Jacksonville, has started me on a doublet of Pomalyst (pomalidomide) and dex following my third relapse.

Blowing by the life expectancy median, and a positive response to IMiDs; two anecdotal arguments supporting my point that cytogenetics may be overrated–at least until researchers can do a better job connecting the dots.

I’m not trying to intentionally rile-up tech savvy advocates.  Just sharing how little difference any of it has seemed to make in my myeloma therapy.

True, a t(11;14) doesn’t mean I’m high risk.  But I do think my story could be inspirational for those of you with higher risk genetic indicators.  Drugs that aren’t likely to work sometimes do.  And we can outlive projections; I’m living proof of that!

Feel good and keep smiling!  Pat