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Hello and NICE ACD

Hi, I have not contributed to the group before although I have followed it since I was diagnosed in 2002. I went through the usual treatments of Interferon. and was then given Gleevec. After a couple of years it was decided I was not responding quickly enough and was put onto Dasatinib to which I responded well. In August this year a pleural effusion was picked up and I have now been lucky enough to be put on Tasignia which I have been on for for a week with no side effects touchwood. I attend the Hammersmith Hospital. I have recently been encouraging lots of my friends and colleagues to sign up to the No.10 petition and have just written to my MP Andrew Mackinley explaining the situation with NICE. I am having difficulty understanding a lot of the NICE findings especially as they mix pounds and dollars when they discuss costs. I hope to go to the Hammersmith meet in January. At the moment I am attending every two weeks to be monitored on the Tasignia and the lung problem. I hope to meet some of you at the Hammersmith in January.

Clive

Hi Clive You are not the only one finding this difficult ! My son - a maths teacher - also found the stats etc complex and misleading. Thats done to confuse I guess!

I kept my info to MP short and simple - brief history of my situation, and why second line treatment is vital, pointed out that the recommendation is to not allow the second line drugs, plus that the suggested double blind trial is, in my opinion, unethical. Then I put the link to both documents in the letter - that way their office can tackle the difficult stuff.

Good luck on Tasigna - I have been on it since Jan last year and am doing well, got to zero at last PCR and that's after trying to get there for 8 years.

ATB
Pennie.

Hi Pennie, thanks for that. I went to the Hammersmith yesterday all looks OK and no side effect so far.

Best regards

Clive