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The Story So Far

Hi Everybody
I was dianosed with CML in June 2008, and have been on Glivec (400mg)since mid July 2008. No significant side effects as yet. The BCR/ABL tests have been reducing nicely, I am down to 0.669% as of January 2009. Went see Doc Ho yesterday at Kings, and my last bone marrow test (in which they bent 4 needles, and took an hour to do!!)showed no detectable Philidelfia Cromosomes. I think this is a great result for Glivec, I do wonder what my life would have been without it.
Best Regards Tony

Dear Tony....... this is really great news. Many many congratulations.

Imatinib has revolutionised the prognosis of CML. Without access to this drug most CML patients would not survive in the long term.
I do hope that for the few who do not respond to imatinib, or for those that find side effects hard to cope with, will continue to get access to the 2nd gen. TKI's without trouble. There are still barriers for some patients accessing dasatinib and nilotinib in certain regions of England.
In this harsh economic time I am not confident that CML patients (and those with other rare cancers)will be guaranteed optimal treatment.
NICE is conducting an MTA of dastatinib and nilotinib in the latter part of 2009 and will reach a decision by April 2010.

CML Support Group has been included as a representative of patients on this MTA (multi technology appraisal)

Meanwhile......... I wish you many more zero's in the future.

best wishes,

Sandy