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September 26, 2003


This update is a little long, but there is lots of information and news. First, there have been questions about remission, and what it means for the rest of my course of treatment. Second, there is the news from my visit to City of Hope Hospital in Duarte.

To explain the first, I think I need to talk a little about the basics. Please understand that this description is strictly a lay mans understanding of the condition and is likely not very accurate from a clinical or pathological standpoint. My form of Leukemia is a cancer that affects one or more stem cells in my bone marrow. Apparently, the bone marrow fills up with undifferentiated and malformed blood cells. Because the cancer cells work more quickly than normal cells, they soon start taking over and clogging the bone marrow and blood with defective cells. I suspect that the cancerous cells might even suppress the activities of the normal cells somehow. The treatment, of course, is Chemotherapy, which I have had twice. The goal is to kill off the abnormal cells, and, if possible, kill off the cancerous stem cells. Because this is what is called a liquid tumor (I think this is right), there is no particular spot in the body one can target and say, "yes, we got the tumor." The best that can be done, is to say that I am in remission. This means that there is no evidence that the cancerous stem cell(s) are producing any leukemic cells. This does not mean that I am cured. In fact, the chances of a cure are somewhere less than 30% right now. Because of the nature of the cancerous cells and the chemotherapy, the chemo hits harder at the cancerous cells, so they go into remission. The purpose of consolidation chemo is to keep beating up on those cells to try to kill them. If treatment does not continue on a regular basis, the cancer cells would come out of remission and start expressing themselves again. In my form of Leukemia, the cancerous cells are particularly resistant to treatment, so continued aggressive treatment is called for even though I am currently in remission. Bone Marrow transplant is an aggressive form of treatment that attempts to completely kill off all of the stem cells in the bone marrow, and replace them with a donor's healthy stem cells. This treatment increases the chances that the cancerous cells are killed off. The doctor said that I have a 60% chance of surviving the bone marrow transplant treatment and going into long term remission. I believe that long term remission is defined as more than one or two years. If there is no relapse after 5 years, I believe they consider that a cure.

My visit with City of Hope was interesting and informative. The doctor wants to get started right away with treatment. There are some lab activities that need to take place first, and arrangements need to be made for the donor to get to the hospital. They anticipate starting treatment in two weeks! The first step in the treatment is more chemotherapy. The doctor will not be giving me Radiation. First, 5 doses given for an hour daily as an outpatient, then a single dose of a different drug given as an inpatient. Immediately after this, the donated cells are given. The recovery process is similar to what I have experienced already with chemotherapy, although it will take longer, because the donated stem cells have to find their way into my bone marrow and implant themselves there, and then start producing blood cells. In addition, there is danger of something called Graft Versus Host (GVH) Disease. Strong immunosupressant drugs are given for the first three months to try to suppress GVH. The drugs are tapered off slowly after that, unless GVH appears. If that happens, the immunosupressants are given long term. GVH primarily affects the skin, gut or liver. Of course, since the immune system is suppressed, there are a variety of antibiotics that I will need to take to protect me from infections. Because some of these drugs have unpleasant side effects, like messing up the kidneys and other organs, I will be taking drugs to protect me from the side effects of the drugs. And so-on, ad infinitum. Because of the dangers of infection and GVH, I will be staying at the hospital for at least 3 months after the transplant is accomplished. From 3 months to 9 months, I will be under close supervision of a medical facility. I will probably be travelling to COH weekly, with Scripps Green filling in for emergencies. Sometimes one wonders if the cure is worse than the disease!

On the medical front, the hemoglobin finally started to turn around. I have been feeling a little better the last three days or so. RBC count is still down though. The numbers for my Tuesday lab are shown below.

Lab Results

Blood Cell Type

Normal Low




WBC 4.5 5.1 6.8 4.9
RBC 4.30 2.70 2.62 2.55
HGB 13.9 8.6 8.3 8.9
PLT 130 270 304 239

My next appointment is on Tuesday. I will keep everyone updated!


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