Topics Alert

Ground Rules

Date: October 16, 2007

Once every little while, it is a good idea to re-state the ground rules for CLL Topics. Our membership is growing by leaps and bounds and some of the newer members may not have a clear idea of what we are all about. The latest article on our website regarding Refractory CLL caused a couple of our members concern. These are long-standing members of our patient community and their discomfort with the article concerns me. We never publish patient emails since confidentiality of patient information is of utmost importance to us. But I think I can publish my reply, and you can infer the concerns based on my responses. Here it is.

Be well,

Chaya
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Dear xxxxxx:

You give me much more credit than I deserve.

I am merely the reporter: the results that upset you so much are not mine, the conclusions are not mine, most of the specific technical wording is not mine. Definitely the abstracts and the full text articles I cite are not of my authorship. The survival statistics for double refractory patients we described in our article comes from some of the best known names at M. D. Anderson. I have attached the full text of their article, so that you can verify its authenticity for yourself, if you wish. What impressed me about the content of the various articles is the uniformity of the results and conclusions, coming from some of the best known and best respected experts.

In my opinion, access to accurate information is our best defense. You are of course entirely free to disagree and in that case I strongly urge you to stop reading what I have to say. I have never claimed to have medical expertise, in fact I make a point of insisting I am no more than a layperson observer of the CLL scene every chance I get. I am obviously a very interested observer, since my family’s fate hangs in the balance as well. My obligation and duty to my readers is to tell the truth, the whole truth and nothing but the truth, to the best of my ability. My readers’ obligation to me is to make up their own minds as it seems best to them and go to their medical team when they need medical advice. That is what they pay their doctors for. My “two cents” costs a great deal less than that – it is free of charge.

I have no desire to practice medicine without a license and the last thing I want is to become a cancer “guru”. I thought the title of my review as well as the caveats in the opening paragraph were pretty blunt. If patients then choose to proceed and read the rest of the article, surely it is unfair to shoot the messenger? Would CLL Topics retain its value to our readers if we were selective in our reporting, and published only rosy pictures and glowing press releases from company sponsored clinical trials?

The latest QOL survey results published in the Br.J.of Hematology had some interesting findings. It seems CLL patients do not appreciate being told to go home and not worry, that this is the “good cancer” to have and that they are more likely to get hit by the proverbial bus while crossing the street. It seems most patients have a better understanding of this disease and its ramifications. They do experience first hand the impact this disease has on us and our families. They particularly do not like the condescending attitude of doctors who fail to take seriously this life threatening and incurable cancer.

Perhaps if more doctors took us and this disease seriously, we would have better therapy options for double refractory patients and more research would be done to improve their odds, more efforts made to develop Best Practices and expert consensus and more serious attention given to prophylactic protection against infections and the like. I would like to have a dollar for every member I have heard from who was given the “gold standard” fludarabine as frontline therapy immediately after diagnosis, thereby burning through this important line of defense – often with no anti-viral prophylaxis. Several good friends of mine suffer from excruciating post herpetic (shingles) nerve pain to this day. Two are blind because of infections in their eyes from attacks of shingles. Most of these real tragedies are preventable if all our local oncologists bother to stay abreast of CME and if patients also have accurate information with which to protect themselves when their doctors fail to do so.

Thank you for the kind words you had to say in the early portion of your letter. Once again, I think you give me more credit than I deserve or want.

Be well,

Chaya
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