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Anybody out there with Complex Varient CML?

Hi

I was diagnosed in september 2010 and I am far from reaching molecular remisssion.  This is due to the fact that I have Complex Varient CML.  Basically, chromosomes 6 and 8 are also in the mix with 9 and 22 which my consultant believes is restricting my response to Imatanib.  I am due my next bone marrow test in September to see if Imatanib is working better, after which a drug change may be necessary if molecular remission hasn't been achieved.  Is there anybody out there with this problem and how is it working out for you.

Thanks,

Karen Garnett

Hi Karen,

I am not familiar with the effect the changes in the other chromosomes would have on your response to imatinib. Given that imatinib only targets bcr/abl (the oncogene that drives the PH chromosome/CML) your PH+ cells should be reducing. You say that you are far from reaching molecular response, can you say how far? A you are now around 15 months from diagnosis and would want to see at least a major cytogenetic response- i.e less than 35% bcr/abl. According to newer research your consultant should be considering changing therapy sooner rather than later.

I do not know where you are treated but it might be a good idea to find out why/how changes in other chromosomes might have an effect on your response to imatinib. If you are not already treated at a CML expert centre like Hammersmith/Kings/Liverpool/Leeds/Manchester/Newcastle/Birmingham/Glasgow etc....... then would it be possible for you to get a second opinion? It seems a long time to wait until September for a bmb.....given you have had a sub-optimal response at this stage. In any case you do not need a bmb to determine whether you are responding better- that can be done with a PCR test from a peripheral blood sample.

Best wishes,

Sandy

 

You might want to read this recent study published in Blood:

http://bloodjournal.hematologylibrary.org/content/117/25/6793.long#T3

 

'Usually, variant Ph translocations are observed at diagnosis in CP CML patients, and their occurrence is not associated with disease evolution. These translocations have been reported in 5%-10% of CML patients at diagnosis.5–8 The prognostic significance of the occurrence of variant translocations has been discussed in previous studies, but data about the outcome of patients with variant translocations after therapy with tyrosine kinase inhibitors are limited. The studies that are available are usually case reports, small series, or large series but involving patients in different phases of disease and treated with different drugs (eg, interferon and tyrosine kinase inhibitors). Therefore, the European LeukemiaNet recommendations do not provide a warning for patients with variant translocations, suggesting that variant translocations have no impact on the prognosis of CML.29 Further, some studies have suggested that patients with variant translocations do have adverse outcomes,4,30–33 whereas others have reported that such translocations have no influence on response or survival.'