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Alert Number 15

Familial CLL

Date: April 20, 2004

Earlier this year we published an article titled "Not the worst day of your life", describing familial aspects of CLL. One reader who should know better took exception to the article on the grounds that she has two kids, neither of whom has CLL, therefore she is sure there is no such thing as familial CLL. I beg to differ. Familial CLL is all too real, "the intergenerational incidence of disease occurring in ostensibly healthy persons" has been well documented. Statistics does not address the case of the individual, but it is a powerful tool in determining the probabilities and odds as they apply to whole populations.

Everyone of us who is a CLL patient and a parent should be aware of familial CLL. The phenomenon of "anticipation" observed in familial CLL suggests that if the disease strikes one of your kids, it has a higher chance of striking at a younger age, and be of a more aggressive variety. Bad news. As parents, we can do a lot to make sure our children have better therapy choices than we have today, that the research progresses at a faster clip so that our understanding of the disease and how to treat it grows soon enough to protect our kids. This cloud has a silver lining, the very familial nature of CLL says there is fundamental and crucial information to be mined here. By studying the detailed genetics of CLL families, scientists can hope to unravel some of the mysteries of this disease. Burying our heads in the sand and denying the reality of familial CLL is not the answer, getting mobilized as a patient community, registering your data if your family has a history of CLL, being aware of clinical and scientific developments as they take place, that is the way of protecting ourselves and our kids.

The abstract below from the University of Rochester Medical Center, Rochester, NY, makes the case for more patient involvement in getting together the information on familial CLL. My Valentine's day article on Familial CLL can be found at Not the Worst Day of Your Life.

Please be active and involved in this fight. Your kids (and CLL Topics!) depend on you to grow and flourish. Neither will survive long without your love and support.

Chaya
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Abstract

Blood Cells Mol Dis. 2004 Jan-Feb;32(1):246-61.

Familial (inherited) leukemia, lymphoma, and myeloma: an overview.

Segel GB, Lichtman MA.

Department of Pediatrics, University of Rochester Medical Center, Rochester, NY 14642, USA.

We have reviewed the world's literature that addresses familial leukemia, lymphoma, and myeloma. We have catalogued the phenotypic abnormalities associated with an increased risk of developing a hematological malignancy. These syndromes, such as Fanconi anemia or familial platelet syndrome, have been well characterized and in many cases the gene responsible for the predisposition has been defined. We have focused, however, on reports of a familial incidence of hematological malignancy in which no prior predisposing syndrome was reported. In this circumstance, so-called pure familial leukemia, lymphoma, or myeloma, the intergenerational incidence of disease occurred in ostensibly healthy persons. These families have been grouped into sets in which (a) anticipation, (b) immune abnormalities, (c) linkage to HLA phenotypes, (d) linkage to chromosome abnormalities, or (e) gene abnormalities have been reported. They have also been grouped by type of leukemia. Purely descriptive reports, not accompanied by some information on pathogenesis, have not been included. They are catalogued in some of the references cited in this paper. Anticipation is a prominent feature of familial leukemia, lymphoma, and myeloma, supporting the concept of germline transmission of a susceptibility gene. Although linkage to an HLA phenotype occurs in some families, no consistent intrafamilial pattern has emerged. Deletion of chromosome 7 is associated with familial acute myelogenous leukemia, but no other recurring localization has been established. Although putative susceptibility genes have been identified in some families, the likelihood is that the mode of inheritance is different in different families and different genes are involved even within a specific Mendelian pattern. Although as yet not reported, the frequency of familial CLL and the intensity of its study indicates that the gene or genes involved in that familial disorder(s) should be identified conclusively soon if sufficient families for study can be assembled through international cooperation.

PMID: 14757442
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