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A Clinical Trial Just for Me

Posted by Frederick Wasti
Mar 07 2012

Chronic Lymphocytic Leukemia (CLL) is only one type of leukemia. However, unlike some other leukemias, it almost seems to be a family of leukemias. While some people discovered to have CLL will have the disease for a very long time, and may never even need treatment for it, other people with CLL will be found to have a rapidly progressing disease with poor chances for survival.

CLL is diagnosed most often in middle-aged and elderly persons, and, for many of them, a relatively benign disease progression can often be expected. CLL can also be found less commonly in younger people, and they, unfortunately are more likely to have a more rapid progression. My age at diagnosis was probably just a bit lower than "average", and, unfortunately, my CLL was not to be of a "chronic" (as in "persistent" or "long-lasting") nature.

Medical science has come a long way (but still has a long way to go) in understanding disease such as CLL. Ten or twenty years ago, for example, doctors would find that many CLL patients could last a long time, often without treatment (or with the less sophisticated treatments that were then available), but that a few patients would respond to treatment poorly or even not at all. Great improvements in diagnostic techniques nowadays, however, show that CLL affects a person variably, depending on the presence or absence or status of several interrelated genetic and cytological factors

I will delve into some of these factors later on, but I will mention one right now, as it is very relevant in the progression of my disease and its treatment.

My CLL might sometimes be specifically be referred to as "17p-deleted CLL". What this signifies is that, while all of my non-leukemic body cells and blood cells have relatively normal genes on relatively normal chromosomes (23 pairs in number), my leukemic lymphocytes (that likely all arose from just one cancerous cell some years ago) have a deletion of the short end of chromosome number 17. (The short end of each chromosome is called the "p" end, while the long end is called "q".)

The problem with having 17p-deleted CLL is that it is very difficult to destroy the aberrant cells. (I will try to explain the reasons later.) For the vast majority of current CLL patients, a concoction of three drugs called "FCR" (for now, let's just use the initials for each of them) is considered the "gold standard" of treatment. However, for the few percentage of CLL patients that are 17p-deleted, the (so-called) "gold standard" does not work very well at all - FCR depends upon the leukemia calls having a fully functional pair of 17th chromosomes.

I have been unwilling to "try" FCR for as long as I have known about the 17p-deleted status, but I am about to start a clinical trial at the Dana-Farber Cancer Institute that is specifically tailored for us 17p-deleted people. In fact, the title for the trial is "Ofatumumab With High Dose Methylprednisone Followed by Ofatumumab and Alemtuzumab in 17p CLL". More about this later...

Categories: Leukemia