A Personal Journey
This is a graph of my lymphocytes (white blood cells) over time. From when 1st diagnosed with CLL (Aug. 29, 2002, Thursday, at 1:30 in the PM… but who’s counting?) to now. This graph is a testament of how an appropriate new mixture of chemo + antibodies quickly can wipe out rampaging and unbridled lymphocytes.
The normal range of lymphocytes for males is 5,000 to 10,000 lymphocytes per deciliter. Deciliter? Let’s just say a tiny, tiny volume measure. Tiny, tiny? Google if you must.
My count was about 14,000 when 1st tested in 2002. After that my count was consistently higher at every blood test which is one way a hematologist suspects CLL as opposed to non-hodgkin’s lymphoma. For the latter, white cells would be elevated but would NOT continue to rise.
Yes, it does give me pause to realize now that I was diagnosed without expensive lab work (FISH). I was diagnosed according to the quack school, i. e. If it quacks like a duck, looks like a duck, then it is a …. Also, I was experiencing typical CLL systems…extreme fatigue, night sweats, swollen lymph nodes, and pain in my left side (spleen).
Note the spiking of white cells during 2011, particularly after October. This is when my Naples hematologist knew my “watch and wait” period was over; he had to do something. At my count level (80,000+), and my sick feeling, my prognosis was poor. From Nov. 2011 to Feb. 2012 (about 3 months) I went through 1 cycle of infusion therapy that consisted of IV drip 4 times a week (chemo + monoclonol antibodies), plus a series of injections to stem nausea, gout, weakness, and infections. With Treanda chemo (a derivative of mustard gas), since I was already nearly bald, I was hoping for the reverse effect, that my hair would grow back but no such luck.
While the chemo was hard to take, Rituxan (monoclonal antibody) really made me uncomfortable. Uncomfortable because, I guess, antibody treatment was working. This was when the antibody was forcing my peripheral blood system, to “attack” itself and wipe out the offending lymphocytes. I felt like I had the worse case of flu ever without congestion. After infusion, would return home and to couch. I would run a fever, would chill, JV would pile blankets on me, and we’re talking Florida here.
Looking back I wonder…suppose my chemo + antibody treatment didn’t take? Other treatments were available. Cancer treatment for the most part is a business without guarantees. No need to dwell on that question, but let me say it never hurts to be lucky in dealing with the big C.
Looking at the graph, the slow then accelerated rise to peak, followed by steep decline in 2 months demonstrates how quickly I experienced remission, remission that still is holding to this day.
I just had complete blood count (CBC) and an appointment with Dr. Koslov (Oct. 26, 2015). My white cell count was a low 7,000, my other blood markers were well within normal range. My lymphocytes were actually on low side which is a good sign….chemo is still working. Lymph nodes not swollen. For first time I hear, “no need to blood test you until April.” Vacation.
I am taking monthly vitamin B12 shots to help maintain my energy level which still is below par.
Question now is will my over abundance of lymphocytes re-occur, as they often do in cases like mine. Will I beat odds? Nobody knows. My Naples hematologist is keeping close tabs via CBCs 4 times a year. I have a crush on her. She resembles Sandra Bullock, and she’s trying to save my life.