CMML JAK2 support advice and experiences

The JAK2 V617F mutation is a somatic mutation in the JAK2 gene resulting in cell autonomuos overproduction of myeloid cells. The mutation is present in virtually all patients with PV (polycythaemia vera) and in about half of those with  ES (essential thrombocythaemia) and PNF (primary myelofibrosis). However, its prevalence and clinical significance in the general population is unknown.

CMML or chronic myeloid monocytic leukaemia, does not have as good an option for therapy as CML outside of an allogeneic stem cell transplant. With the complication of the JAK 2 gene it seems that the disease is even more complex.

Is transplant an option for you? where are you being treated?

The following abstract is about a phase 1 study of a new drug (oral) that is being used on patients diagnosed with Myelodysplasia, CMML and AML and seems to be recruiting at centres in Germany, France and also the US.

I have posted the link to this abstract on the ASCO 2010 meeting website:

A phase Ib study of oral panobinostat (LBH589) administered with 5-azacitidine (5-Aza) in patients with myelodysplastic syndromes (MDS), chronic myelomonocytic leukemia (CMML), or acute myeloid leukemia (AML).

http://abstract.asco.org/AbstView_74_53115.html

I will try to do a little more research on options for CMML and get back to you if I can find anything.

Best wishes,

Sandy