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Hello All

I was diagnosed on 31st May 2006 with CML.

I'm a 36yr old male.

Kind of knew something wasn't right gradually getting weak, generally feeling rough then nose bleeds in Jan 2006 - muscle cramps then what started off feeling like a stitch turned out to be very painful, could not really pinpoint the pain just left hand side - of stomach/chest, thought maybe it was my heart!

Anyway taken to hospital where A&E GP thought i'd pulled a chest muscle lifting something heavy.. after linking me up to heart monitor and blood test, i was told no pulled muscle...... How i wish it was!!!!

After being told i straight away thought my days were numbered and was shaking and of course upset.. didn't really take it on the chin like maybe i should have.

The consultant reassured me there was a fantastic drug on the market and could lead a normal life... didn't make much difference to me at the time though.

After taking Hydrox' for a few weeks my WBC went from 280 to 40 something.
Then started Glivec 400mg which so far hasn't given me any real problems, been looking in mirror every morning to see if eye area has started to swell (paranoid), maybe only slighty.

Do the side-effects if any take a while to set in? , understand it's different for everyone but now been 7 weeks since i started taking them, sometimes feel a little bit of sickness after taking them in the morning.

Also is it normal to have a stiff back with CML intially, only when lying in bed through the night then ok when up and about, (overcrowding of blood cells maybe?).

Next question to you is 'How much alcohol can i have? Consultant said small amount ... didn't feel it was appropriate to push em'on this matter... felt like sinking a couple of bottles of wine on several occasions.

So now i'm feeling quite healthy i will return to work after the company GP gives me the thumbs up.

Have been looking at the internet everyday now for a cure or treatment for CML and glad to see the likes of 'Tasigna' & 'Sprycel' etc.
Don't really want to read about the negative side, resistance and worse etc, as i'm trying to stay on the positive side of things.

As you can see i'm probably a little bit naive to all of this at the moment.. and hope this posting hasn't offended anyone.

Thanks for reading.

Hi there - did you ever get any response to the drinking question??!

How's it going?

I just started on the Glivec on Sat - no side fx so far...

Kenny

Hello Kenny

Not as much drink as i'd like but still have a couple of beers or glasses of wine with a meal...... best not to over do it as your liver processes the Glivec, so don't get plastered!!!

best of luck on the wonderdrug.

Jason,

Hi Jason,

Been on the Glivec for a few weeks now and all OK - a few side fx in the second/third week but nothing too serious. You? Yeah, been taking it easy on the beers since I started..everything in moderation, and all that.

Are you from Glasgow by any chance?

Cheers

Kenny

Hi Kenny

Sorry for late reply, no i'm from London.
Had my 2nd BMB yesterday, so gonna have a beer tonight to calm my nerves, just the 1 though!

Kenny,

Similar experience but years ago but when on Glivec, side effects were there but nothing that was unbearable. Main thing in my opinion is not to push things too far - I manage to some good amounts of red wine but I was cautious when starting.

Hope all goes well with you and that all carries on smoothly.
Regards

Phil & Babs

Kenny,

Similar experience but years ago but when on Glivec, side effects were there but nothing that was unbearable. Main thing in my opinion is not to push things too far - I manage to some good amounts of red wine but I was cautious when starting.

Hope all goes well with you and that all carries on smoothly.
Regards

Phil & Babs

Hey Jason - sorry for leaving it so long to reply, and thanks for responding. The reason for the Glasgow question is that, being from Glasgow (but living in NZ), I did a search on 'glasgow' using the search tool to the top right of the screen and it brought up your posting! Dunno why. Also, your turn of phrase sounded quite Scottish and, your question about booze..well, who could have blamed me! Ha! Sorry for the confusion...

Hope things are progressing well for you. I have my 1st PCR next week so fingers crossed. Been feeling good to date.

All the best - Kenny

I agree - take it easy - that's what I've been doing. I have a few beers now and then.

All going smoothly to date - no major probs.

Thanks! Kenny