A dear friend just sent me the following analysis of a revelation about himself. He had gone for a routine physical. He's about my age (I'm 63). This is one reason I don't go to doctors unless I have a broken bone or a sucking chest wound. Another reason is that I can't afford to even see a doctor.
I have Stage IV Chronic Lymphocytic Leukemia, abbreviated CLL. This is a blood-borne disease of the white blood cells. At some time in the past I had a single cell go rogue in my body and that cell and its progeny have been busy cloning themselves ever since. My diagnosis came late and at present most of my white blood cells are of the useless, cancerous variety. The end of my life will most likely be due to an out of control infection unless I can turn the corner with treatment to kill the cancerous cells. There is no time to waste.
BACKGROUND: Last Thursday I went to see my Oncologist for some test results and more guidance and direction. My CT scan showed only very tiny lymph nodes in my groin, no larger than the ones observed in my neck at the time of initial diagnosis. This is good. The same scan failed to locate any solid tumors anywhere in my chest or abdomen and that is also good. What was not good in the CT scan was my spleen, currently swollen to twice its normal size. It is clearly plugged up and contributing to my low platelet count. More about that later.
The second test we talked with the Oncologist about was a bone marrow biopsy done earlier in the week. Not good news. Bone marrow is the only place in the body where red blood cells and platelets are made. My bone marrow consists of 75% cancerous cells. Therefore there is a dramatically diminished ability to create these two important blood components.
The combination of less red blood cells and platelets being created and the spleen acting like a filter that is plugged up and holding some of the precious few created back, my platelets are starting to tank. Normal range for platelets is 130,000 to 350,000 per unit volume. Mine measure 63,000. (I asked the oncologist why my red blood cell count is still ok and he surmised that they are nice and round and small and a larger number are making it through the spleen. The platelets are very large in comparison and their job is after all plugging up holes. So fewer are making it through my enlarged spleen and back into the circulating blood.) The low platelet count is not a danger to me by itself. It takes levels of 30,000 or fewer to actually create a risk of the blood not clotting enough to save me from "bleeding out". Think of the platelet count as being the canary in the coal mine. Low platelet counts point to advanced stage leukemia.
I have read that the Chronic Lymphocytic Leukemia that I have is best thought of as a disease of accumulation. The cancerous cells cause no harm individually. They just reproduce themselves and lacking the cellular signal that tells them when to die, they become a larger and larger component of the circulating blood. As they build up they tend to congregate in the bone marrow, spleen, liver, and lymphatic system. When concentrations get up to critical mass the functions of the affected areas are impaired. This further impacts the ability of the body to function normally and typically fatal infections are the result.
All of the above led my Oncologist to categorize me as having Stage IV disease. There is no Stage V. My disease is ready to be treated now and there are just a few small pieces of the puzzle left to be discovered to help choose the best treatment regimen. The test holding the most interest is a cellular level test on my bone marrow that actually looks for the chromosomal defect that caused the original cancerous cell. Some defects associated with my disease make for very slow advances and the resulting leukemia is categorized as being "indolent". Other chromosomal defects make for much more aggressive cells. If I have a slow growing type, I would most likely have had this disease smoldering in my blood for ten years or more and it is only now that it has reached the point where treatment is indicated. At the other end of the spectrum there are some really aggressive types. If that is what the test shows, I have maybe only had the disease for a year or so but the number of cancerous cells is already up to critical mass.
The reason that this is an important distinction is that indolent disease cells are lazy and easier to target with chemo and/or immunotherapy. If I were unlucky enough to have the fast moving type, the cancer cells are thoroughbreds and they are very resistant to treatment. This would call for heavier doses of treatment and maybe different compounds altogether. And even then the prognosis is poor. Wish me luck on this test. Results are due back any day and I will let everyone know what I find out. I promise to not be so wordy next time. I took the time with this monster post to bring everybody on the list up to the same page. If you have read this far you know most of what I know.