I am not a doctor, merely a CLL patient who is doing his best to be well informed. When one has chronic lymphocytic leukemia it is important to remember that in almost all cases this cancer is incurable. When your doctor recommends that you begin some form of treatment, such as the intake or infusion of various toxic substances, I recommend that you ask yourself (or him/her) a couple of important questions:
(1) Will taking these drugs mean that my immune system will function better than it does now? In other words, will my chances of dying from pneumonia or some antibiotic resistant disease this winter be reduced?
(2) Are there peer reviewed studies which show a meaningful extension of lifespan, i.e. survival rate? A longer duration of life; not a few months, but years.
As far as I have been able to find out, all of the current popular therapies appear to have significant side effects. Reduction in the effectiveness of one’s immune system, unusual infections, various degrees of impairment in the proper functioning of one’s kidneys, heart, or liver. So I no longer accept the validity of spin terms like full remission (usually temporary), good response to the therapy, or minimal residual disease when a physician is discussing therapy options.
When one takes into full consideration the down side of these therapeutic agents, one needs to closely look at whether the drugs will make your immune system work better than it does currently; and whether there is reliable and repeatable peer reviewed statistical proof that on average you might expect a meaningful increase in life span by undergoing these toxic treatments which can significantly weaken one's already rather deficient immune system.
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