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On the ACOR internet website dedicated to Chronic Lymphocytic Leukemia Professor Terry Hamblin responded today to a lady with a nice, concise description of how patient life expectancies vary depending upon whether the CLL they have is mutated (good) or unmutated (bad).
Here is his e-mail:
Date: Tue, 16 Oct 2007 05:12:35 EDT
From: Terry Hamblin
Subject: Re: what are these mutations about?
Dear XXXXX
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The mutated/unmutated dichotomy refers to the state of the immunoglobulin variable region genes, and I doubt that you have had this done. It is only offered at a few laboratories around the world. It is an attempt to determine whether the CLL arises for a relatively early cell on lymphocyte maturation or a relatively late one (at least it was; the explanation has become a lot more complicated now).
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Unmutated CLL has an average survival of 8 years, mutated CLL an average survival of 25 years. The del 11q abnormality does carry a poor prognosis and is much commoner in the unmutated subgroup. Usually patients respond well to treatment but they tend to have rather short remissions.
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The important thing to remember is that these statistics come from lumping together large numbers of patients and represent an average. Many patients do not fit with the average.
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Terry Hamblin
Very good description Dr. Hamblin. It takes a brilliant person to explain something really technical and complicated in a manner where the layman can easily understand it, but without any condescention or "talking down" to the patient.
So if one is tested at one of these highly sophisticated laboratories (I flew over to England and got Dr. Hamblin himself to draw the blood to do the testing), and the results indicate that you are unmutated, then ON AVERAGE you have about an eight year life expectance from the date you were originally diagnosed.
Now that I live in America I am no longer
getting tested, but I went back and looked at the test results from when I was living in Europe. I was diagnosed in December 2002.
I have the bad kind of CLL (unmutated) so in theory I have already used up five of the eight years average life expectancy. Well, that really is OK. Honest. I'm not just whistling past the graveyard.
In the last five years I have done more, gone more new places, and done more new and different things than I did in the 20 years prior to coming down with leukemia. I am not at all anxious, or in any big hurry to go on to the next great adventure.
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I have two friends who also have CLL. One lives here in El Paso, Texas and the other in Hillsboro, New Mexico. Both have had a variety of chemotherapies inflicted on them. And both have had new rounds of chemo in the last few months that went wrong.
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Both of these people are very dynamic, highly educated people who have led lives which are far more interesting than normal - living abroad, etc. And no doubt chemo was the correct decision for both of them.
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I am absolutely convinced that the proper decision for me is to just let nature take its course. OK I'm eating really healthy, getting plenty of exercise, have quit smoking and drinking completely, and I try to remove any stress causing agents from my lifestyle.
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NO INJECTIONS OF RAT POISION for me, thank you very much.
I'm in no rush to move on to the next plane (or as John Lennon described it, "get out of one car and get into the next") but when that time comes I am fully prepared and ready to go. In fact in a way I'm sort of looking forward to the trip. Kind of like the excitement before I moved to Europe, but many orders of magnitude bigger.
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