I Plan to Live Long Enough to Be Cured of Multiple Myeloma

Advances in the treatment of this cancer give me confidence that I can reach my goal.

Get Permission

Coping with a life-threatening disease can be daunting, but I don’t let cancer affect my daily life or my plans for the future.
— Rich Rubenstein

Tweet this quote

Like many other patients diagnosed with multiple myeloma, I didn’t know I had the cancer until I broke a bone. I had felt a twinge of pain on my left side when I hoisted a bucket of baseballs over my left shoulder after participating in a baseball tournament in the spring of 2011, but there was nothing to indicate that the discomfort I was feeling was anything more than a minor muscle strain. A month later, however, I felt a pop under my left rib cage as I turned over while resting on a lounge chair, and this time the pain was more severe, reverberating throughout my upper body and finally settling behind my heart.

Although an electrocardiogram, chest x-ray, and blood tests ruled out heart disease, lupus, and other serious illnesses, they indicated a disease I had never heard of: multiple myeloma. A series of additional blood tests and imaging scans confirmed a diagnosis of light-chain multiple myeloma.

I met with a medical oncologist, who immediately prescribed the standard of care for newly diagnosed myeloma patients—lenalidomide (Revlimid), bortezomib (Velcade), and dexamethasone, or RVD—and she told me I would need a stem cell transplant to have the best shot at a prolonged remission. The transplant plus RVD maintenance therapy kept my cancer in remission for nearly 2 years, but as is common with this incurable disease, the cancer ultimately progressed, and my oncologist recommended I see a myeloma specialist to plan my next course of treatment.

Buying Time

My new oncologist, Saad Usmani, MD, FACP, Director of Clinical Research in Hematologic Malignancies at the Levine Cancer Institute in Charlotte, North Carolina, suggested a second transplant to buy me more time, to benefit from promising new drugs in the pipeline. “We’re always hoping to get to a cure,” he said.

Although the second transplant only gave me 15 months of stable disease, it was long enough to have results from clinical studies showing the effectiveness of a novel therapeutic regimen of carfilzomib (Kyprolis), pomalidomide (Pomalyst), and dexamethasone, or CPD, in the treatment of patients with relapsed or refractory myeloma. The drug combination was successful in keeping the myeloma from progressing, but its side effects, mainly severe shortness of breath, were too much for me to manage. That said, it gave me the bridge I needed to take advantage of the next therapeutic advance in this cancer—daratumumab (Darzalex), the first monoclonal antibody approved by the U.S. Food and Drug Administration for use in myeloma—and it’s been a miracle drug for me.

Dr. Usmani has since added pomalidomide and dexamethasone to the daratumumab regimen, and the combination is so far keeping my disease stable. Importantly, I don’t have any side effects from the therapy. I do have lingering neuropathy in my hands and feet from earlier treatment regimens, but it doesn’t hinder my quality of life.

Celebrating Life

I’m not naive about the seriousness and unpredictability of multiple myeloma. I know how dismal the survival statistics were just a few years ago. In contrast, however, I’m aware of how new therapies like daratumumab and novel treatment combinations are prolonging life expectancies. I plan to be among those survivors who live many years—decades even—after diagnosis.

This year I’m celebrating my 50th wedding anniversary, and I plan to be around long enough to see my grandchildren graduate from college and attend their weddings. Coping with a life-threatening disease can be daunting, but I don’t let cancer affect my daily life or my plans for the future.

Reaching My Goal

I’m been fortunate to have wonderful oncologists who have listened to my concerns about treatment side effects and how they impact my quality of life. I appreciate the adjustments they have made in my therapies over the years, so I can continue to pursue my career and active lifestyle without compromising my health.

Knowing about continued advances being made in multiple myeloma is giving me the confidence that I will continue to stay a step ahead of my cancer and be around to see my ultimate goal come true: a cure. ■

Mr. Rubenstein is a software salesperson. He lives in Matthews, North Carolina.