Since my multiple myeloma relapsed in 2010, I have participated in a clinical trial testing an immunotherapeutic called elotuzumab (Empliciti) together with lenalidomide (Revlimid) and dexamethasone. The experience is so different from the one I had when I was initially treated 17 ½ years ago. Back then, I could barely leave the house for 3 years. Now, I have days when I can easily walk the 5-mile round trip to Fire Island Lighthouse on Long Island.
My long journey with cancer began in February 1998. I was trying to teach my daughter to figure skate. It was our first time out on the ice together, and I fell, breaking my hip into 17 pieces. Shattering your hip into 17 pieces is not something that is supposed to happen to a 43-year-old man. So, while I was in the hospital having my hip screwed back together, the doctors ran a number of tests and discovered that I had stage 3 multiple myeloma. I had lytic bone lesions in several of my neck and back vertebrae and in my skull. I put my diagnosis down to being exposed to radiation when I was on a business trip to the town next to Three Mile Island during the accident in 1980.
Back when I was diagnosed, there was no standard treatment for multiple myeloma. My local hospital first put me on vincristine, doxorubicin (Adriamycin), and dexamethasone. But that chemotherapy regimen gave me serious heart problems, and after a month, they switched me to cyclophosphamide.
I was so sick that in May, the doctors told me I would be dead by Thanksgiving.
I was not satisfied with that answer and began looking for a second opinion. I ended up seeing Dr. Ken Anderson at Dana-Farber Cancer Institute. Dr. Anderson gave me a 5-year plan and told me, “If we can’t cure you, we’ll come up with the next best thing to keep you going until we find something that will give us a positive result.” I had a stem cell transplant on November 13, 1998. The high-dose chemotherapy and total-body radiation that preceded the transplant were brutal. My immune system was decimated, and I had to have all my routine childhood vaccinations again to rebuild my immune system. Life was extremely tough for 3 years, but I’m glad I did it.
After that, the only treatment I received until 2010 was thalidomide, in 1999, for some lytic bone lesions in my shoulder and pamidronate (Aredia) to strengthen my bones. Then, in 2010, when I was helping out one of the patients that Dr. Anderson had asked me to mentor by driving him to Dana-Farber for treatment, I thought it would be a good time to have my blood checked because I had not had it done for a couple of years. Three days later, the doctor, Dr. Paul Richardson, called and said, “We have a problem.”
I was back where I had started, with stage 3 multiple myeloma. Dr. Richardson told me that treatment had changed a lot since my initial diagnosis and suggested I consider a clinical trial for an immunotherapy called elotuzumab. He explained that the drug would use my immune system to kill the cancer cells and that it was nothing like the radiation, chemotherapy, or stem cell transplant I had previously received. I trusted him implicitly and enrolled in the trial.
For the first 2 years, my M-spike, which is how the doctors keep track of how my disease is responding to treatment, kept going up and down. Then, in 2012, Dr. Richardson added intravenous immunoglobulin to my treatment plan, and my M-spike started falling. Last summer, it was so low that they did a bone marrow biopsy to see what was going on. They couldn’t find any trace of cancer.
I’m currently taking a break from 73 months of treatment with elotuzumab, lenalidomide, and dexamethasone to give my body a rest. My M-spike numbers are staying low, and it seems that elotuzumab really did get my immune system to kill off the cancer cells.
I consider myself very blessed in so many ways and I want to give back. When I was diagnosed with multiple myeloma, the only person I had heard of who had the disease was Lenny Zakim. So I was delighted when Dr. Anderson asked me to be a mentor to other patients. It has given me a chance to help others navigate the disease. We have the tools to treat this devastating disease and give patients a better quality of life, as well as the realization that the diagnosis of multiple myeloma is no longer a death sentence.