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Alert Number 276

CLL - Work in Progress

Date: February 19, 2008

I have been around the CLL scene since summer of 2001, when my husband was diagnosed with CLL.  It is amazing how much has changed since then, how much more we know about this disease.  I am not quite as naïve as I used to be, I am more likely to ask tough questions before I buy into cleverly crafted press releases.  But I remain optimistic that the pace and quality of the research being done has yielded real life improvements for our patients, and this will get even better over time.

The frustrating thing for me has been the slow pace of trickle down.  All these wonderful discoveries, all these new and brilliant insights from our top researchers, and yet not much changed at the local oncologist level.  We have published several reviews to highlight “Best Practices” recommended by expert centers such as the Mayo Clinic – in an attempt to educate our patients, even if their oncologists did not bother to keep up with the latest research.  (See links below)

The last time CLL guidelines were formally announced was back in 1996.  You will be happy to know the powers that be have finally gotten around to re-writing these important guidelines.  For those of you who have kept with the latest happenings, and been faithful readers of our reviews and cheat-sheets, there is little in the new guidelines that will catch you by surprise.  For those of you who have not been as diligent, here is the abstract of the Blood article that summarizes the new and modified thinking about CLL.  If you want to read the full text of the article, (and I cannot see why you would not want to), write to us and we will help you locate it.  In any case, it is an important article to have in your home collection of important CLL articles.

What makes this an important development?  Imagine this scenario:  as a well-informed CLL patient you know that it is a good idea to get the FISH test done before making therapy decisions.  What if things have changed since your last round of therapy?  What if there has been clonal evolution and you now have a high risk abnormality that rules out certain drugs?  Why go through therapy with drugs that are not likely to work for you?  Surely you cannot implement a changed game plan, if you do not have a good fix on the lay of the land?

But here is the frustrating part – what if your oncologist does not believe in FISHing?  How do you convince him, and how do you argue with your insurance company for coverage, if it comes to that?  Well, this here is the latest, most official CLL guidelines.  And it says you should get FISH test done before embarking on first or subsequent rounds of therapy.  Wave this paper under the nose of your somewhat behind the times local oncologist, and I am sure you will have fewer problems convincing him to do the right thing.  

This article has many more such nuggets, for the careful reader.  One of these days I may even do a full length review of it, cheat-sheet and all, if enough of you think the full text article is too difficult to struggle through on your own.  Let me know.

Best Practices Reviews

CLL - Disease Characteristics

What Type of CLL Do You Have?

Stay smart, be well.



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