Hi all,
first time posting on here.
I'm a 38 year old guy who just got diagnosed with CML in May. It's been a bit of a shock but i had my first review and i'm responding to 400mg of Glivec each day.
Just wondering if there are any people from Milton Keynes on here?
Also as an aside is drinking alochol verboten or not on Glivbe?
Cheers,
Hope everyone is doing well.
Hi,
I'm 34, diagnosed last November. I did ask early on whether I could have a drink or not, and the answer I was given by my consultant is that there is no issue with alcohol and imatinib - although I know I have heard of a couple of people say that they did better without it (I think that everyone would feel healthier off the booze!) but that could be coincidence too, I guess.
Obviously that doesn't mean it's good to drink your head off, but more that you should be just as sensible with drink as before - there's no particular reason to give it up, I was told.
I hope you're doing well - good to hear you are responding to the imatinib. Not too many side effects, I hope.
David.
Hi and welcome,
The only reason to be careful about how much alcohol you drink is the additional effects on your liver. TKI like imatinib (Glivec) are all metabolised by the liver and so puts an additional strain on its ability to detoxify efficiently. In my experience, most people do cut down- although there is no reason to cut it out entirely, unless you lose the 'taste' for it- I know I just did not like wine, beer or any kind of alcohol when I was taking imatinib.
If after a while your liver enzymes show a rise (your doctor will let you know if this happens) then you know to cut back or stop entirely until your liver recovers.
Re Milton Keynes. There is at least one member of this forum who lives near to MK. I am sure if he notices your post he will contact you.
Good luck and don't worry too much. It is early days as yet but at least you have found this forum and believe me you are not alone.
If you have any further questions do not hesitate to ask here.
Sandy
Hello,
My name is Bob Osborn, I live in Buckingham, but work in MK. I was diagnosed in December 2008, started on Gleevec, but after 9 months I had to switch to Dasatinib, as Gleevec did not work for me. The dasatinib works well. My personal email is bobosbo@hotmail.co.uk
If you would like to talk to another CMLer, you can email me & I can give you my phone number, or if you would like to meet face to face that would be no problem, I know how good it is to meet other CML patients.
Bob
Hi
My name is Tony and I live in Beckenham in Kent. I was diagnosed in July 2008 and I am on 400mg Glivec. Being looked after by Kings. I used to love red wine but now can't stand even the smell of it. So I changed to Pinot Grigio or Gin and Tonic. As Sandy said when you have your BCR/ABL tests they will always do a liver function test, as Glivec is quite toxic. Your consultant will let you know if your are putting too much stress on your liver. I only drink in moderation, but I do drink regularly and my liver function has never changed. At the moment my creatine is at the top of the range, which means that I am not drinking enough, but unfortunately, I think that they mean water. I hope that everthing goes OK for you in the future.
Tony
Hi
I was diagnosed in May 09 aged 42. Have been on Glivec ever since and done really well.
At first, I stopped all alcohol as I just didn't like it with Glivec. Gradually I have become reacquainted, and now enjoy a glass of wine or two - red or white makes no difference. I was extremely moderate to begin with and still drink far less than I did. I have now reached the point where it is fine before I take imatinib but not afterwards (just don't feel like it) which means that, as I take my pill in the evening after dinner, I stop pretty early. And sometimes I get quite a bit of acid reflux and if that happens I don't drink at all.
My consultant said right at the outset that alcohol and imatinib is fine. How much you drink is up to you but as Sandy and others have said, many do moderate either because they want to minimise the potential strain on the liver (and mine is just as good as it was by the way) or for one reason or another they just want to. In my case, I enjoy an drink or two when I feel like it but no longer over indulge - at all really.
Hope that helps.
Richard
Glad things are working out ok, and welcome to the club.
On drinking, I haven't really changed my habits at all. Anything beyond about 3 beers or half a bottle of wine is rare for me, but one does occasionally forget how much has already been drunk. I do follow the new guidance that a couple of alcohol-free days per week is a good thing. After 18 months on Dasatinib, I had a liver function test a few weeks ago and was assured that all is well.
Maybe I should try harder :)
Rod
Hi, I'm Vic, i'm under MK hospital & had CML for 6+ years & am 37 now.
Tea total ish except for the odd bottle of Baileys!
Hope you are doing ok on Glivec, wonder drug for me & I lead a pretty
normal life on it.
I read this forum regularly as often useful info & nice to know you aren't
alone. All the best. Vic :)
