By Phil Witt – CLL Patient
About halfway between 59-60 years of age, I remarked to my wife, “I must be getting old.” I was having trouble balancing life as a full-time Physical Therapist and chief farmhand on our small horse farm. Up till then doing both was not a problem. At the same time, what I thought was a lipoma appeared on my neck. I had a lipoma in that spot before and was told as they popped it out it would most likely regrow. Also, I started having night sweats and increasing fatigue. My heart rate was elevated even while resting in bed. While this was going on, my daughter was getting ready to get married, and I had been trying to lose some weight so I would fit into my suit. Suddenly losing weight got much easier. “Yippee,” I thought. Oops, I was mistaken. The week after the wedding, I went to have the lipoma removed as planned. The plastic surgeon felt it and said, “Holy s**t, that is wrapping around your sternocleidomastoid muscle, and I am sending you to the ENT clinic, NOW!”. I walked over to the clinic and the doctor felt it and said, “You’re having a CT scan”. He got the results and then did a biopsy. Once the biopsy was completed, I drove to my work clinic, (I am a Physical Therapist) about a 20-minute drive. As I pulled into the parking lot, the doctor called me to say,” “This will sound worse than it is, but you have chronic lymphocytic leukemia (CLL), and I am sending you to the cancer center.” And so that is how my now 12-year journey with CLL started.
I walked into my work clinic, and my colleagues asked, “How did your doctor appointment go?” Well, I have chronic lymphocytic cancer. Silence from my colleagues, but supposedly this is the good leukemia. That is when I learned that the diagnosis of CLL is pretty much a garbage term. You can have the “good kind” where waiting and watching (worrying) is the correct intervention strategy, or you might be like me where treatment was in order immediately. Back in the dark ages, 12 years ago, that meant FCR (fludarabine, cyclophosphamide, and rituximab), or FR. My hematologist/oncologist (heme/onc) informed me of a clinical trial comparing those two options. After listening to her and hitting the literature, I opted for FCR. The next six months were spent with a port to receive the chemo and save my veins. You quickly learn who your friends are. My wife and I counted 53 people that stepped up to help us over the six-month treatment phase. We had a big party for them at our favorite Mexican restaurant once it was safe for me to be in public.
Remission lasted 6.5 years, and when my CLL started back, the treatment world had changed. I started ibrutinib, the daily oral targeted Bruton tyrosine kinase (BTK) inhibitor. I thought I was in heaven. This controlled my cancer greatly; however, after 3.5 years, the medicine became toxic to my heart, and it became necessary to stop taking it. There was no rush to re-start treatment. I had no CLL symptoms. My blood work looked wonderful. The doctor and I decided to do a blood measurable residual disease (MRD) just to see how close the ibrutinib came to making my cancer undetectable. Not too bad, my MRD was positive but only at 2.4 percent. We decided the appropriate plan was to watch and wait.
We had pretty good timing. COVID was becoming active. I received my first dose of the COVID vaccine while on ibrutinib and was one of the lucky 13 percent of people taking the drug to respond to the vaccine. The next five vaccines were done while I was off ibrutinib. I will receive the seventh vaccine while in the clinical trial described below.
After two years, my CLL returned. I thought two years off was pretty good for having taken ibrutinib. Unfortunately, my wonderful heme/onc doctor at The University of North Carolina at Chapel Hill (UNC), Dr. Mathew Foster, was leaving. He helped me find Dr. Sitlinger at Duke. She is the primary investigator (PI) in the triplet study of pirtobrutinib, rituximab (my old friend), and venetoclax. As I write this, I am hitting the 7.5-month mark in the two-year treatment phase of the study. I am still having some trouble getting my aging body to acclimate to the medications, but that is a small price to pay for the potential benefits. Hopefully, this might be the last treatment I will need in my lifetime.
Deciding to participate in the trial took some study, seeking outside advice, discussion with the doctor, and the okay from the boss (my wife, Susan). The main consideration was if I was not in the clinical trial, I would have selected venetoclax and obinutuzumab as my time-limited couplet. However, by pretreatment testing it was clear I needed the pirtobrutinib so I got screened and hoped I would get randomized into the triplet arm of the study. I had to be comfortable that the dual arm of rituximab and venetoclax would be a reasonable treatment strategy as well. After studying the literature, discussing it with my doctor, and getting outside opinions, I decided I would be comfortable with either arm of the study. I had my fingers crossed I would get in the triplet arm, and I thankfully did.
I guess my best advice is to learn all you can about your disease and the research into treatments. Utilize CLL Society and Leukemia and Lymphoma Society (LLS). Those are both great resources. Build a support team if possible. The support team can include family, friends, your treatment team, outside medical people, your favorite bartender. I use a heme/onc doctor in Boston as a professional sounding board. Ask questions; expect answers. Stay safe. We are all in this together.
Philip l. Witt, PT, PhD
Practiced physical therapy for 45 years as both an academic and clinician specializing in spinal dysfunction. Married to Susan. We are enjoying life on the farm with horses, dogs, chickens, and nature.
