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CMML

Hi All,

I'm hoping someone can give me some info. My Father was diagnosed with CMML July last year. About 9 weeks ago we were told he's condition was now acute. Since then he has been on chemo tablets and has had a number of blood transfusions.

I've been trying with very little luck to find out more about CMML - specifically treatments available, both approved and in clinical trial and if there are any Doctors that specialise in this particular form of leukaemia. We already know he is too old for a BMT.

The Doctors he has seen are difficult to have a dialogue with and Dad is feeling depressed lonely and confused.

Does anyone know where I can find more info or who I could contact. I'd appreciate any advice.

Many Thanks
Debbie

hi Debbie,
it is difficult to advise you on CMML as it is a different disease to ph+ CML. however you may be able to find out more information on this disease and the options open to your father by joining the ACOR online group for myelo proliferative diseases of which CMML is one.... go to

http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=MPD-NET&A=1

and join the mailing list for MPD.
this is what i did when i was first diagnosed with CML and i found out that there was a clinical trial that i was eligible for.
i am so sorry to hear that your dad is feeling lonely and depressed. it may be a good idea for him to get a referral to a specialist leukaemia centre. i am not sure where you live but there are quite a few specialist centres around the UK.
i do hope that you find this of some help.
best wishes,
sandy C ;o)

Debbie,
i have done a quick search on the WHO clinical trials portal

http://www.who.int/ictrp/search/en/

and found 2 trials that your father may be eligible for. see url's below. however they are both in the US so if he was eligible he would need to be willing to travel.

best wishes,
Sandy

http://clinicaltrials.gov/show/NCT00038675

http://clinicaltrials.gov/show/NCT00381550