David Wellenstein, MD: Reclaiming the Joys of Retirement, Thanks to CAR T-Cell Therapy

Age: 74Sauquoit, New York

Six years ago, I felt one or more ribs break when I took a swing with my golf club. X-rays and follow-up scans led to the diagnosis of advanced multiple myeloma. Over the next year and a half, I went through multiple treatment regimens and while initially I responded positively to each treatment, my cancer markers would start to rise after a while. The treatments also resulted in severe side effects that significantly impacted my quality of life. Then, about three years ago I participated in a clinical trial for idecabtagene vicleucel (Abecma). Since then, my cancer markers have gone down to zero and the PET-CT scans show no sign of active cancer. I am enjoying my hobbies working with wood and metal at my dream shop and spending time with my family.

My journey with cancer started about six years ago. I was 68. I’m a radiologist. At the time, my wife and I were planning our retirement. I had been encouraged to take up golfing as a new hobby while spending time in Florida and was told that the experience is quite different here in the Northeast because the grass is different. So, when I got back home, I decided to take a swing on my lawn to see. The grass indeed was different. The club got caught a bit and I had a sudden pain in my left chest. I knew that I had fractured at least one rib. After a few days, I was still in pain and went to my hospital to take a chest X-ray. It was a Saturday and since there were no other radiologists there, I took a peek myself. I found three rib fractures and, as I was taking one last look, I noticed multiple tiny holes throughout my skeleton. I immediately knew what it was. As radiologists, we don’t see it often, but it was the certain pattern of multiple myeloma and it appeared to be quite advanced. I was shocked. I had to sit there for a few minutes to regain my composure. The following week I saw an oncologist who agreed with my diagnosis and recommended a bone marrow biopsy, CT scan and a PET scan to confirm and stage the disease.

We laid out a plan for my treatment. My first regimen consisted of three drugs: a targeted therapeutic, bortezomib (Velcade), an immune modulator, lenalidomide (Revlimid), and a steroid, dexamethasone (Decadron). I received these treatments for three weeks and it looked like I was making marked improvement. The cancer marker numbers were dramatically down. We continued with this treatment with a three week on and one week off schedule and the cancer markers continued to decline. However, I developed some serious side effects. I developed severe pain (neuropathy) in both legs to a point that I had to use a walker. The symptoms were getting worse and began to affect my bladder. As a result, we had to taper off my treatment for a while. Unfortunately, as soon as I went back on my old regimen the side effects returned. This was a significant challenge and I had to switch to a different treatment regimen. Over the next two years I went through nearly eight different combinations of anticancer agents. However, the neuropathy continued to be a problem. At this time upon my oncologist’s recommendation, I sought treatment at the Dana-Farber Cancer Institute. There, I was treated with several newer chemotherapy regimens. Unfortunately, these treatments always seemed to work at first, the marker numbers would come down but then inevitably, after a month or two, they would start to rise again.

As we were running out of options, my oncologist at Dana-Farber discussed the possibility of getting into a clinical trial that was testing a new CAR T-cell therapy in patients with refractory multiple myeloma. I thought it was a very intriguing approach and decided to enlist. I had to wait for a few months but eventually had the chance to enroll in the trial. The CAR T treatment was quite a process. They had to harvest T cells from my own blood, modify them in a laboratory, expand them in large numbers, and infuse them back into me. I had the process done twice since we had to stop my first treatment after I experienced some confusion which is one of the known side effects of the therapy. During the second round, I received the maximum possible number of the altered T cells that could be administered.

Since my last infusion about three years ago, we have been monitoring my disease through bone marrow biopsies as well as complete blood workups. My cancer marker number has gone down to zero and the PET-CT scans show no sign of active myeloma. The side effects have also been stabilized. These days I am back at my shop doing a lot of wood turning and blacksmithing and most importantly spending time with my grandchildren making birdhouses. I can’t emphasize enough the importance of funding cancer research because I’ve experienced firsthand the incredible impact science-driven advances can have on lives.

Since my last infusion about three years ago, we have been monitoring my disease through bone marrow biopsies as well as complete blood workups. My cancer marker number has gone down to zero and the PET-CT scans show no sign of active myeloma. The side effects have also been stabilized. These days I am back at my shop doing a lot of wood turning and blacksmithing and most importantly spending time with my grandchildren making birdhouses. I can’t emphasize enough the importance of funding cancer research because I’ve experienced firsthand the incredible impact science-driven advances can have on lives.