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Another Perspective

Decision Day

As I write this blog, I am waiting for a telephone call that will tell me if I have been accepted into a trial clinical study for Chronic Lymphocytic Leukemia (CLL). If I have been, the likely outcome, then I will be told which of two drugs, one old and one new, the study computer has assigned to me. The decision is based not on what is best for me. It is determined by what is best for the clinical trial. I am okay with this. Both drugs are better options than beginning treatment at this point with chemotherapy. I can always do that later.

I am writing this blog so I will remember. This is a statement of my current condition before I begin the treatment.

On a pain scale of 1-10, I am now a zero. This is good but deceiving. Without pain I think I should be fine, but my CLL is progressively getting worse. My white blood cell count hit 134+ recently. Normal is 4-10. My platelet count remains in the 50s when normal is 140-370. Several new areas of concern have developed; among which is a decrease in my red cell count.

The one symptom that reminds me I have blood cancer is fatigue. I rarely can go more than 4-5 hours without a nap of an hour or two. I seldom awake feeling totally refreshed. My energy unwinds rapidly, leaving me feeling wiped out a good deal of the time.

The clinical trial study promises a recovery. Not a cure, but a recovery. As long as I remain on the new drug (which I eventually will be), relapse is not anticipated. How exciting is that!

There currently is no cure for CLL. Today a typical pattern involves a chemo treatment of some sort that is followed by being symptom free for about two years. Then a harsher drug combination is used with a shorter stable period. Then another harsh drug treatment follows that

I clearly need to begin treatment as soon as possible. The study drug, Ibrutinib, is taken as a pill, not by infusion. As promising as Ibrutinib is, my oncologist tells me other new drugs will be available in the next few years. He told me there are four prominent studies going on now worldwide. Each study attacks a different aspect of CLL. The challenge for the researchers in the next few years is to coordinate all of these approaches into one.

I can’t wait for that day to arrive. As noted I need treatment now. So I have elected to volunteer for one of these four trial studies. It will help to move the investigation of CLL forward toward the day when it is completely understood and curable.
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