One year ago today, Gretchen and I met with Dr. Richardson at DFCI for the first time. During our session, he responded to my question with these fateful words that changed our lives forever: "You have Multiple Myeloma". From that instant on, I became an MM patient and Gretchen became a caregiver. Nothing would ever be the same again. And so began our journey.
One year later, I can look back at a remarkable year. It's hard for me to believe how fortunate I have been. I was diagnosed early with Stage 1 MM, with my only symptom being anemia. I had no bone destruction or kidney issues to deal with. On that first day, I got the opportunity of a lifetime to participate in the MLN9708 clinical trial. I jumped at it. It worked beautifully, and after 6 cycles, I had achieved CR.
I struggled mightily with the decision to undergo a stem cell transplant, but again I had the opportunity to participate in an important clinical trial. I underwent the ASCT in March, and while it was no picnic, I responded well and recovered quickly. I drew what Dr. Richardson considers the best random arm of the trial, involving both consolidation and maintenance therapy. I am now half way through the Velcade/Revlimid/dexamethasone consolidation phase. I am still in CR, and so far have not suffered any of the feared peripheral neuropathy side effects from the Velcade. So far, so good.
There have been a few rough patches along the way. Last fall I contracted cellulitis, which required serious IV antibiotics to control. I have also encountered occasional bouts of low energy, fatigue, and/or diarrhea. Of course, my latest self-inflicted trauma from the ladder incident didn't help.
It has taken quite a bit of adjustment for both Gretchen and me to deal with our new reality. Anxiety and uncertainty are never far from our minds, and being tethered to DFCI has defined our schedules for the past year. Overall, however, I have no complaints. My health now is better than I could have dared hope one year ago today. We are blessed, and we are grateful.
Expanding on my last post on cancer research, my fellow patient friend, Steve, recently sent me an article about an existing drug used to treat Rheumatoid Arthritis (RA) which might have some benefits for MM. Here is a link to the abstract:
A patient with both RA and Smoldering Myeloma was given the anti-RA drug, tocilizumab (trade name Actemra), and surprisingly, her M-Spike went down. Tocilizumab helps block the protein Interleukin-6 (IL-6), which causes inflammation in RA. IL-6 is also a bad guy in MM, as it stimulates the proliferation of the myeloma cells. So far, attempts to control IL-6 in MM have been unsuccessful. Here is an example where cross fertilization between different medical specialties may speed the development of new treatments. Could tocilizumab be a possible miracle drug for MM? Is anybody actually looking at this?