The Patient Experience at WCMC
Russell Meyer is a MCL patient at Weill Cornell Medical College and a participant in Dr. Ruan’s clinician initiated lenalidomide + rituximab trial.
In January 2012, I began experiencing a sore right knee, and swollen glands in my neck and left side. Lacking a fever, I went to see my local physician, who agreed I had a palpable mass in my neck, and I was referred to an otolaryngologist for a biopsy. This procedure revealed a preliminary diagnosis of non-Hodgkin lymphoma, with indications of mantle cell lymphoma (MCL), and possibly small cell lymphoma.
An oncologist’s thorough examination verified previous results, finding additional swollen nodes in my right elbow, arm pit, and groin. While MCL is rare and not curable, it is treatable. My oncologist recommended either aggressive chemo-treatments including R-CHOP, or a wait and see approach. He also recommended I seek a second opinion. With these options my daughter Denise, wife Betty, and myself sought more information about MCL, and my available options.
This led to Denise contacting Dr. Morton Coleman an affiliate of NewYork Presbyterian/Weill Cornell. It was important that I not be bedridden, isolated, and unable to travel during treatment. Moreover, I wanted my local oncologist to be involved in the decision-making process of my care, and reiterated that I would not make a decision without consulting him. Discussing options with my local oncologist, Dr. Coleman suggested I would be an ideal candidate for an investigator initiated trial exclusively conducted by Dr. Jia Ruan.
In coming to grips with my condition, and evaluating my options, I had no reservations with participating in the clinical trial. While researching trials at other institutions, I sometimes felt pressured to participate. At Weill Cornell, Dr. Ruan and staff were accommodating and willing to work with my local oncologist.
In July 2012, I decided to enroll in Dr. Ruan’s lenalidomide + rituximab trial for patients with previously untreated MCL. After reviewing my treatment options, my local oncologist agreed to coordinate with the Weill Cornell physicians regarding my care. Instead of long hospital stays, my medication would be mailed to me directly. I would receive a rituximab infusion every 8 weeks from my local oncologist, and would go to Weill Cornell once a month for blood work and examinations.
Daily life has not been seriously affected by the trial. I am fortunate and blessed to have a great supporting family, friends, and church. The side effects I have experienced have been manageable. Before diagnosis, I was already retired so scheduling treatments and examinations have not been a problem, though everything is helped by Weill Cornell’s coordination with my local oncologist. In hindsight the decision to participate in a clinical trial was easy, though this conclusion involved lots of work, prayers, and help of family and friends. Although there are risks in participating with a clinical trial, it was the right decision for me.