BY JOEL WHARTON All of us recall that life-rocking moment when we entered our journey with Multiple Myeloma. I have now listened to, read, written, and shared many stories about that shocking day of revelation. Reflecting on that moment resurrects great fear and anxiety about an uncertain future. I was 36, the husband to Kari, and dad to our 3 young children (just 2, 3, and 6 at the time of my diagnosis). What a horror! Sound familiar? The origin of this story did stir up a hornet's nest of fear and grief. But then, on the heels of this emotional paralysis arrived a decision to live with intentionality...to exercise my faith by taking decisive action about my treatment and the manner in which I chose to live with MM. None of us had the opportunity to negotiate the terms of this experience. I resent that some days. We did not ask to be invited to this life-threatening war! Yet, this war found us. Like some of you, I find myself on the front lines of this battle through my participation in a clinical trial. I chose to pursue this treatment option to more fully integrate this new found intentionality. Shortly after diagnosis in 2009, I began the standard care protocol of Revlimid/Dexamethasone and achieved a near complete remission after 3 cycles of treatment. My trusted MM specialist, Dr. Don Benson (The James Cancer Hospital at The Ohio State University Wexner Medical Center), mobilized me for an autologous bone marrow transplant and I enjoyed 20 months of stable, near complete remission. I opted to discontinue the maintenance dose of Thalidomide after transplant due to neuropathy. As my monoclonal protein slowly increased during the latter part of 2011, I sought treatment options that would reflect my determination to choose the battle ground for the next phase of intervention. Dr. Benson introduced his clinical research in the area of immunotherapy, specifically the anti-KIR antibody. This phase II clinical trial combined the experimental drug IPH 2101 with Revlimid for a two-year time period. The trial procedure established a pre-treatment baseline through blood tests, EKG, and the x-ray skeletal survey. The experimental drug was administered via IV over an hour-long infusion on a monthly basis for 8 consecutive months. On the first day of treatment, I was required to spend the night at the hospital as they closely monitored me for possible infusion reactions and side effects. I had no adverse reactions. I then returned to The James on a monthly basis for a total of 8 infusions. Each infusion involved an 8-10 hour day as blood draws occurred at the 1, 3, and 6-hour mark post-infusion to monitor my reaction. The Revlimid 25mg script schedule occurred on 21-day cycles each month. I did experience some fatigue, decreased energy, GI complaints, sleep problems, and low red/white/platelet counts. Fortunately, the side effects were minimal and manageable when I respected my limitations. I worked a full time schedule at work and enjoyed the responsibilities of family life. My hope is to demystify the clinical trial process and encourage fellow MM fighters to stay on the offensive. Future treatment options cannot be developed without willing study participants. In fact, I have been the recipient of treatments that were developed because of the cooperation of MM fighters in years past. I formerly believed that clinical trials were the equivalent of "last ditch efforts." Currently, I have a long-term view of my survival and plan to steward my time by wisely choosing treatment options that will likely include future clinical trials. I enthusiastically endorse this process in the hopes of facilitating more effective treatments and increased survivability. Please consider talking to your oncologist about participating in a clinical trial.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.