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