My journey with CLL started, like those of many with the disease, with a routine physical in the fall of 2002 when I was 58 years old. My primary care physician (PCP), an internal medicine doctor, told me that my white blood cell count (WBC) was a little high. My WBC at that time was around 13,000 per cubic millimeter. My doctor ordered a retest and the same result was obtained. Being a good clinician, my PCP referred me to a local hematologist in Wilmington, DE.
After going for more extensive blood tests, I met with the hematologist. I was shocked to learn that I had a chronic form of leukemia, chronic lymphocytic leukemia (CLL), in a very early stage. After the diagnosis, the hematologist had additional tests run to characterize the disease and a CAT scan to establish a baseline on lymph node and spleen size. Fortunately, I did not have swollen lymph nodes or an enlarged spleen.
When you do extensive imaging, you may uncover new medical issues. That happened in my case. A small nodule was discovered in one lung. That led to a multiple year relationship with a pulmonologist and many repeat CAT scans and a few PET scans until it was decided that my nodule was not malignant, and I was dismissed for the nodule issue.
After the workup for my CLL, I met with my hematologist and was surprised to learn that the recommended approach for CLL initially was watch and wait. The community hematologist did a good job of explaining the reason for this approach. There were completed clinical studies that showed no benefit to early intervention and the chemotherapy treatments have side effects. My primary care physician told me not to worry about my CLL, “it was a good cancer”.
Unfortunately for me, I had the first symptoms of what would turn out to be my second chronic disease in the fall of 2002. I lost some feeling in some toes on my left foot and was told to see a neurologist at a major hospital. Thus, began my long relationship with neurologists at Johns Hopkins. My initial symptoms over several years turned into peripheral neuropathy in my feet and muscle weakness in my legs and arms. After many years of tests including a muscle biopsy and genetic testing, I was finally diagnosed with a rare progressive neuromuscular disease with no known treatment, mitochondrial myopathy. Over the 17 years since diagnosis I have progressed from normal walking to use of a cane, a walker, a scooter and finally in 2017 a power wheelchair. When I finally joined a CLL support group in 2017, I jokingly told the group that my wheelchair was not a result of my CLL!
My journey with CLL continued in the watch and wait state for almost fifteen years. At first, I saw my community hematologist yearly. Then as my WBC numbers increased more rapidly, the testing interval was changed to every six months, then every 3 months and finally in late 2016 to every other month. I was able to put the disease out of my mind except for those days after the blood draw and before my next appointment. What would be the results of the most recent blood test? Would it be time to discuss treatment options? The uncertainty produced anxiety.
By 2017 my white blood cell counts were increasing more rapidly and my hemoglobin, red blood cell and platelet counts were falling. My community hematologist was starting to think about treatment options, and it was clear he was concerned about choosing a treatment, particularly since there was a need to consider my neuromuscular disease when choosing a treatment.
By 2017 I was aware of the CLL Society and had subscribed to the CLL Society’s newsletter. I was aware of their motto, “Smart Patients get Smart Care” so I attended an event in April 2017 featuring Dr. Anthony Mato and his team from Abramson Cancer Center, University of Pennsylvania. At the time Dr. Mato was Director of CLL at Abramson Cancer Center and recognized as a CLL expert. (Dr. Mato left Penn in late 2017 and is now Director of CLL at Memorial Sloan Kettering Cancer Center). Dr. Mato and his team presented an update on CLL, its treatment options, and status of research on new therapies. I was impressed and called soon after the meeting and set up an appointment with Dr. Mato.
By my second appointment with Dr. Mato in July 2017 we agreed that it was time to begin treatment due to anemia. Dr. Mato, after consultation with my neurologist at Johns Hopkins, recommended a course of treatment with Gazyva (obinutuzumab). As warned, the first infusion was rough. I developed a low- grade fever 2 days after the first infusion and was hospitalized as a precaution. The balance of the infusions went smoothly and led to a remission, which remains in effect.
I am very grateful for my remission and the care of the team at Penn Medicine, now led by Dr. Schuster, another CLL expert. I strongly recommend consulting a CLL expert before making a treatment decision. The treatment options for CLL have expanded rapidly in the last few years and there are many new drugs and combinations of drugs in clinical trials.
The Philadelphia CLL Support Group and the CLL Society publications have proven to be valuable resources. It allows me to stay current on the rapidly changing and improving CLL treatment options. The support group meets monthly and it has been great to share information with others about their CLL journey. I highly recommend joining a support group if there is one in your area.
Joel was born and raised in the New York city metropolitan area. He graduated from The Cooper Union with a degree in Chemical Engineering. He then relocated to Wilmington, DE and obtained a Masters degree in Chemical Engineering at the University of Delaware. After a 35-year career with Hercules Inc., in research and development and marketing, Joel retired and now resides in Glen Mills, PA.
Originally published in The CLL Tribune Q2 2019.