Chronic Lymphocytic Leukemia Survivor
Strength and Support Lead To an Optimistic Future
For more than a decade, Dr. Larry Saltzman has lived with chronic lymphocytic leukemia/small lymphocytic lymphoma. His strength and endurance, a skilled medical team using cutting-edge treatments and the support of his wife, Sharon, have gotten him through.
As a family physician, I know the importance of annual checkups, and I’ve gotten them for decades. As a doctor, I also received copies of my blood work. When I noticed my white blood cell count was higher than normal after a checkup, I paid close attention to my body and discovered bumps, which turned out to be swollen lymph nodes. I voiced my concern with my physician and, on January 8, 2010, at age 56, I learned I had chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL).
I sought a second opinion at a leading cancer facility near us and had genetic testing that indicated I would eventually need treatment, but since it was very early in my diagnosis, the doctor suggested “watching and waiting.”
After three years, my blood tests indicated it was time to start treatment. In July 2013, I began six months of chemotherapy. Because the treatment would make my immune system vulnerable, my oncologist recommended that I retire, if possible. I made the difficult decision to step away from my family practice. Over my career, I’d delivered babies, performed surgeries and seen patients, and I loved it.
Just 11 months after chemo, I relapsed. That was quicker than we expected. I was interested in clinical trials, so I transferred my specialty care to a CLL physician who was intimately aware of clinical trials regarding my condition. By June 2014, I was showing fluid symptoms of cancer, such as night sweats. As a doctor, I’d told patients they might have night sweats, but until I experienced them myself, I realized I had no idea what I was really talking about.
Next, I was referred to a specialist who suggested I try either a clinical trial that would require me to stay in New York City for many months or a single, FDA-approved pill that I could take at home in Sacramento. I chose the pill. My counts improved and the bumps went down, but six weeks into treatment, I had significant diarrhea and water retention in my legs. A bowel obstruction made me very ill. I had surgery to remove the right side of my colon and the end of my small intestine. Because my doctors didn’t know if the pill had caused my issues, they didn’t know what to do for me next.
In January 2016, I began a new clinical trial, which consisted of a new type of oral therapy. After two or three months, my lymph nodes went down, but by June they were huge. Because the trial was limited to just one medication and I needed additional treatment, I had to leave the trial.
My next option was a chimeric antigen receptor (CAR) T-cell therapy clinical trial back East. We planned the trip to have my T-cells harvested in July, but just prior to my travel, I developed shingles. They rescheduled me for September 2016. While we waited, my doctor suggested a new combination of two drugs. Within two weeks, my bumps went down. After weeks of follow-up testing, my CLL was essentially controlled. We didn’t know how long this would maintain, so I kept my harvesting appointment in September. We were told my T-cells could stay frozen for two years, just in case I’d need them.
Within a year, I had a minimal residual disease (MRD) test that showed the two drugs were working. A year later, in January 2018, my bone marrow was tested and it showed that in a sample of a million of my cells, I had 11 cancer cells. The disease was very suppressed but still there. I wasn’t in complete remission.
In January 2019, a small lymph node in my neck became swollen. Another bone marrow test showed that now 44 cancer cells were there. Not significant, but something was brewing. Six months later, the lymph nodes in my neck popped out significantly. Radiation therapy calmed them down, but a PET showed cancer throughout the left side of my chest. My doctors agreed — the only hope was a clinical trial using CAR T-cell therapy.
It had been three years since I’d had my T-cells frozen, and technology had advanced so much that we were advised not to use them. I was enrolled in a trial in Seattle, and my wife, Sharon, and I went there to have my T-cells harvested again. It would take 3 to 4 weeks to process them, so we returned to Sacramento.
Right before going back to Seattle to have the T-cells reinfused, I became very ill. My platelets were down to 1,000, and I needed a transfusion. Tests showed 75 percent of my cells were leukemic, and that meant I wasn’t strong enough to do the trial. I was bound and determined to get CAR T-cell therapy, so when I was deemed healthy enough, we got on the plane for Seattle where I had several rounds of chemotherapy for the next three months. The goal was to make me strong enough for the CAR T-cell therapy.
On December 19, 2019, I was reunited with my T-cells and received my CAR T-cell infusion. I was simply astounded that after all the blood I’d had taken out for harvesting, what was infused back into me – what saved my life – was about one teaspoon. That tiny amount would grow into the millions. I envisioned each cell as a tiny Pac-Man, eating up the cancer cells.
While CLL is still incurable, every treatment is a bridge to another. I have hopes that the CAR T-cell treatment is a longer bridge. Today, peripheral blood MRD testing shows I have zero cancer cells. Some CAR T-cell therapies hold for years; others don’t. We just don’t know, but that is why it’s a clinical trial. In the meantime, I donate blood regularly to continue contributing to the research.
One thing I do know is that I wouldn’t be here without Sharon. She has been indispensable throughout this entire journey.
