CLL

Chaya Venkat is one of the true angels to the community of people worldwide who have chronic lymphocytic leukemia. She operates a web site called CLL Topics which is just full of vital information.

Today she published a great new article called Complete Blood Count: lymphocytes which helps explain the meaning of the various medical jargon and the results of blood tests.

It seems to me that most people who are diagnosed with CLL continue to have a great deal of “faith” in the medical community, whereas I no longer have the “faith.” My experience has led me to to see that the majority of doctors no longer think that the hippocratic oath is especially relevant. I see mostly greed when I look at the medical community here in the USA. There is a wonderful trend towards patients becoming better educated, informed, and somewhat more involved with the process of deciding whether to treat or not, and then even what therapies will be employed. Some doctors accept, maybe even welcome this increased patient education and involvement. Many physicians still resent the patient daring to have the arrogance to ask all these questions, and maybe even thinking that the patient has the right to decide upon their treatment options, or even taking the decision to not allow the doctors to use any of this toxic chemotherapy.

I certainly am not some sort of fundamentalist religious freak who believes that a sacred book or fairy tale demands that only God fix all medical problems. I have broken bones, and thanks to the fantastic medical service I received I not only survived, but I can still use my left ankle (motorcycle accident) and my left wrist (another later accident). Thank heavens for eye doctors and glasses! I do still have high blood pressure after many years of treatment, the common cold still is a problem, and rates of cancer and obesity are growing.

I have also seen examples of the medical establishment torturing people worse than what took place during the middle ages. Both my Grandmother and then later my Mother finished their incredibly productive lives laying in a hospital bed, with their arms and legs tied down to the bed frame, and all sorts of tubes hooked up to them. Both desperately begged to be taken out of the hospital…

In her latest article Chaya Venkat (as always) does an excellent job of explaining complex medical jargon. She also touches on an area that I consider important. Many of the so-called therapies that doctors use on CLL patients are in fact extremely toxic.

In CLL it is normal for one’s immune system to begin functioning well below optimal levels, which makes one far more susceptible to things like various respiratory infections, and even to life threatening pneumonia. Most of the commonly used therapies actually cause the immune system to function even worse than it was prior to being treated by the doctors. This is important to think about.
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It is my judgement that far too many patients and doctors ignore this dilemma due to their “faith” in modern medicine. It is important to keep in mind that in the very recent past even the most intelligent and reputable doctors who treated Kings and Queens had ample anecdotal evidence which convinced them that blood letting was an effective therapy for many medical problems.

When I hear someone use the word “faith” I think of pagan or mystical religious practices; not verifiable, peer reviewed science. Apparently there have not been verifiable medical studies performed which show any significant increase in life expectancy among patients who receive full-blown medical treatment for CLL.

I am well aware that this is a controversial position to take.

I wish that Chaya or Dr. Hamblin could demonstrate to us CLL patients that these treatments are not just expensive medical torture, but that they actually improve the function of the body's immune system, thus reducing the likelihood that one will come down with a life threatening respiratory infection. --Not just anecdotal evidence, but actual repeatable scientific evidence.

Even if these CLL “therapies” don’t make you live any longer, and in actual fact make your immune system function more poorly than before the treatment, if one could be shown that one’s lifespan is not shortened, and that the quality of one’s life is significantly improved, then one could analytically make the decision to allow these toxic substances to be used.

Do the leg cramps go away? Do you regain the stamina you had pre-CLL? Do the night sweats stop? How about the constant, uncontrollable day time sweating? Do all these swollen lymph nodes return to their normal size? Do the platelets return to normal functioning? Same with anemia. And how long will all this good news last?

Apparently in some cases the various toxic drugs are administered, and then within just 6 months or a year the CLL patient again is experiencing all of their prior symptoms. Plus they have the added burden that the drugs used by the doctors have actually made their immune system even less functional than it was before treatment began.

A great many smart and well educated CLL patients do eventually make the decision to allow these toxic treatments. This brings me to conclude that perhaps these desperate and frightened folks have fallen off their donkeys, are now blind, and in a blinding flash of light have received the “faith.”

Perhaps I am more of a scientific-method, skeptic type of guy. Or maybe I am just badly mistaken, and I am missing an important part of the picture. I would love to be shown that I am both grossly ignorant and completely wrong in my analysis.

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