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atypical CML

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Hi, My husband has just had his diagnosis changed from CML to atypical CML. I can't find much information on atypical CML other than it appears to be rare. Can anyone help me with more information about it please? Many thanks, Lesley

http://atlasgeneticsoncology.org/Anomalies/aCMLID2117.html

http://www.bloodjournal.org/content/122/10/1707?variant=full-text&sso-ch...

There's quite a lot available if you use Google Scholar to do a search.

Why is it atypical, do you know? Is it a lack of evidence for the presence of the Philadelphia Chromosome?

David.

Hi David,

We don't know. His haematologist just said in passing that it is atypical and has referred him to a specialist at Hammersmith Hospital. My husband doesn't really want to know anything but I need to understand what's happening to him so it's difficult to ask too much at the time.

I am only assuming it's due to the lack of the Philadelphia Chromosome from the research I've done so far.

Would be really useful to know what questions I should ask.

Thank you,
Lesley

Thank you very much Darley I didn't know about google scholar - very useful.

Lesley

Hi Lesley, as far as I am aware 'atypical CML' (aCML) is a myelodysplastic syndrome (MDS)/ myeloproliferative neoplasm (MPN) - part of a group of rare diseases of the marrow.

aCML does not show evidence of the BCR-ABL1 gene (is Ph neg)) and so does not respond to TKI treatment in the same way as Ph+ CML. I am not expert in any way in this rare sub-group of MPNs, but your husband is being sent to the right place if he is to attend Hammersmith.

Stem cell transplant is a possible treatment if he is eligible and has an HLA matched donor.... or there may be some other experimental therapy in clinical trial that targets the JAK kinases and/or SRC kinase (dasatinib and bosutinib both target SRC) but that depends on the disease stage and the mutation profile. You need to do a little research and ask a lot of questions on behalf of your husband.

Good luck,
Sandy

Does your husband experience SEVERE fatigue and weakness?