Chronic Lymphocytic Leukemia (CLL)
I don’t mind telling you my cancer story. It’s not as interesting as ones I have read about, like in the book “The Emperor of All Maladies” by Siddhartha Mukherjee.
Anyway, I was seeing my family doctor, an internist, once a year for a physical. A few days after the appointment in 2016, she called me and said that my white blood count was abnormally high and she wanted me to see an oncologist at Martha Jefferson. At that point my WBC was around 8,000 where in years past it normally was 3 – 4,000. I had some more blood drawn for more tests. I was surprised at what they found. It turns out I had a genetic mutation that caused an extra gene strand (trisomy I think it’s called) in my 12th chromosome pair. But it existed only in the B-cells. There are several variations of mutation and I got one of the more benign ones. The cancer doctor said that I might die of something else before this gets me, similar to what people say about prostate cancer. But I was now diagnosed with Chronic Lymphocytic Leukemia (CLL).
So I was on a watch-and-wait regimen. I went to the cancer clinic twice a year for a blood draw and minor physical to see if my lymph nodes were enlarging. My b-cell count was increasing every time but slowly and sometimes no increase at all. But it never went down. At the end of 2017, the count was in the mid 20,000’s but still no other symptoms. I then started going in for blood draws every 3 months. By the end of 2018, the count was getting close to 40,000. Then it held there for most of 2020. However, in the fall of 2020 a bunch of things started happening. My count was starting to accelerate, I started having night sweats and I could feel various lymph nodes swelling, mostly in the groin area. My count was now 80,000. The doctor had me do a CAT scan. It showed that my spleen was about double its normal size. It was having a hard time disposing of all of those mutant b-cells. Also, my platelet count was decreasing. She said that was due to them being forced out by the cancer. I also noticed that I was bruising easier because of the lack of platelets. We decided I should start treatment and I asked if I could wait until after the Holidays and she said that would be fine.
I showed up for my first infusion on January 5. The nurse did a blood draw and my count was 135,000. The first 2 infusions (Obinituzumab) were going to be the first 2 days, January 5th and 6th. I will always remember my 2nd day of the infusion as it was January 6, 2021 and I was watching the riot unfold at the US Capitol. The strength at that time was 10%. I would go in once a week for the rest of January where the strength was gradually increased. They said that it would take the body a while to adapt to the death of so many cells at one time. So the first infusion started with a steroid (to reduce inflammation) and benadryl (to decrease allergic response). The benadryl made me sleepy. But then the real thing (10% strength though) started. After a few minutes, I started to feel chilled and asked if I could get a blanket. The nurse brought me a blanket and then took my blood pressure. I started to feel more droopy than just the benadryl and all of sudden there were 4 nurses and my cancer doctor watching me. My blood pressure had dropped to 70/30. Looking back on it I think I was going into some sort of shock. Anyway, one of the nurses told me that she was going to give me something in the IV that would help and that I should try my best not to close my eyes. I came out of that a couple of minutes later and the rest of the day went fine. I came in the next morning and they took a blood sample. My count was down to 65,000. I figured the drug had done a very good job the day before and really stressed out my body. But no side effects then or the rest of the 6 months. After the first month the infusions went to just one a month. I found that the steroids stayed with me for 24 hours and I slept poorly the night after the infusion. It was very consistent. I got a lot of reading done. 🙂
During the first month, I started taking 4 pills a day. The treatment for CLL is a two pronged attack on the cancer-causing cells. The O-mab as a mono-clonal antibody targeted the mutated b-cells. I think the pills went after the T-cells that made the bad b-cells. But I’m not sure. I took the pills for a year. Starting the second week of the infusions and lasting through today, my b-cell count has been in the low-normal range, hovering around 4,000. During that year (2020) the COVID vaccine would have no effect as the drugs I was taking were suppressing the immune system. However there was partial fix with an injection called Evusheld. It would give me antibodies for the virus, but they only lasted for about 3 months so I went in to get “boosters.”
I now go see the oncologist twice a year to see if there have been any changes. And so far, there have been none.
Looking back on it and reading about others experiences with cancer, Lance Armstrong, I feel very lucky. If I had to get cancer, this is probably one of the better ones to get.
When I look back on what I wrote, it kind of goes like a novel. There’s the intro and build up. Then the climax (going into shock on Day 1). Finally the denouement as I am in remission or cancer free. I’m not sure which as the oncologist won’t say. I guess CLL acts differently than other cancers.
The whole process was a Significant Emotional Event as it is cancer and every medical visit was something new for me which helps with my memory. There are many other things in my life which have faded from memory.
