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Dasatinib

Well, I've been on Dasatinib 12 days now and so far so good!

The awful joint pain and cramps I had on Glivec have more or less completely gone as has the 'brain fog' I feel allot brighter and better. This drug should definitely be used as a first line treatment, I didn't realize how bad Glivec made me feel till I came off it. So although it is too early to say whether it is working so far it seems to be better for me and should be available to all.

I have written to my MP, Nigel Mills, several times, as has my family and friends,  but none of us have got a reply yet which I find disgusting as he lives in my town!! The reporter who did an article on me for the local paper also contacted him, not sure if he got any joy!

Fingers crossed NICE will reverse their decision,

Very pleased to hear that you feel better on Das.  At least NICE have said those already on it can stay on it. Long may the improvement last !

Your story touched me as your resistance/intolerance (I can't remember now which it was - Glivec brain!) came so immediately after May 6th you must have been so worried,

best wishes

Chrissie

I have now been on Dasatanib for 4 months after 4 years on Imatinib, and like you I hadn't realised how bad I felt on it until I moved off of it.  Always it was something that i had to accept for the drug doing its job and although not great it was better than the consequenses of not having it, so though i was in some ways very lucky.

However since changing the side effects of imatinib are the cramps, general lack of energy, system issues have gone totally

Also I was unable to do exercise for more than 20 minutes on gleevec as I would have pins and needles in my arms, and that has gone, and I have been able to go back to some decent exercise - running for 8-10 kms 3 times a week which strangely has been such a joy (never enjoyed runnng even before dx).  This combined with a reduced and healthly intake has resulted in me loosing 1.5 stones as well.

Rob