Interesting stuff from conference

January 31, 2011

Hello everybody. After much angst and shouting and impatience, I think my

sainted partner has set it up so I can finally post on this site without my

precious words disappearing to Mars or somewhere. I won't write too much in case

this one vanishes up itself as the others have done.

Anyway, many thanks to you, Lottie, for passing on the website

www.cmlsupport.org.uk and some info from it.

I'll just post bits and bobs about the conference as I think of them.

One of the topics that most interested me was the keeping of data on patients

taking part in trials. It would appear that if you take your medication properly

(ie: at the same time each day and as instructed) you stand a far greater chance

of going into chemical remission, or at least retaining a very low percentage of

CML cells. You'd think it would be obvious, wouldn't you? But according to the

the graph and the stats, loads of people take their pills just when the fancy

takes them and there are some who even leave off taking them altogether for

weeks on end while they go on holiday or something! Can you believe it? Why

would you screw with your life like that?

I'm very lucky in that I have access to a research team who are specialising in

CML. I take Glivec 400mg and have been PCRU for about 3 years I think. As to the

taking of it, I was advised to take it with food and a full glass of water. So I

take it straight after breakfast and then it's done with for the day. Each

Sunday I count 7 pills into a little box so I know where I'm up to through the

week.

Prof , who heads the team, asked at the conference if anyone would be

interested in a trial whereby we reduce our Glivec dose to maybe 200 grams.

Quite a substantial show of hands. So something might soon come of that. I'd be

happy to have a rest from puffy watery eyes.

There's a trial going on in France in which people who are PCRU for 4 years come

off their drugs and are closely monitored. I wouldn't chance this after one year

- I think somebody mentioned their doctor had suggested it. Not a good idea!

That's all for now. I hope everybody is happy and optimistic, if not 100% well.

Very best wishes from Shelagh

PS: Now I've written it, I wonder if this bl***y machine will let me sent it!

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