Hi All
Don't need to post very often nowadays but read occasionally - all is well with Ted, still on 800 mg Glivec and the next anniversary will be 10 years.......PCR is still going down, now around 0.01 ish....
Anyway, I was thinking that some time ago various CMLer's were thinking of upping sticks and moving abroad? We advised caution because we had investigated the possibilty years ago, shortly after diagnosis and there were many pitfalls then. Has anyone tried recently?
Bee
Hello Bee
I read your messege on here today. I am 28 years old and i was diagnosed with CML in May this year. I am on 400mg Glivec.If you dont mind i would like to know about few things which are a bit of concern for me since i have started taking Glivec Regarding Ted i want to know has he been on Glivec for 10 years or was he diagnosed with CML10 years ago? If he has been taking Glivec or other drugs for such a long time, has he been ok and well with it? Has it made any major changes in his life? How old is? I would really apreciate if i can get some advice.
Cheers
Shaz
Hi Shaz
Ted was diagnosed in June 2001and had to do a year of Interferon before he could be prescribed Glivec. He started on 400mg but went on to 800mg, so has been on 800 mg since the end of 2002. Generally he's very well and lives life to the full as anyone who has met him will testify! Yes he has all the usual side effects - terrible cramps, the runs, fatigue, puffy eyes, bone pain, awful problems with indigestion sometimes, plus a few more besides. However he deals with them with good humour, knowing that they will all cycle and subside eventually. If they get too bad - he just "battens down the hatches" for a few days until they pass - which they do. He's now coming up to 64 and is still rockin' !
The only thing he really dislikes is the cold, damp weather of the UK during the winter - it gets into his bones and we would love to be able to continue our long-held dream of living in the sun - but it's not that easy - hence my original question about "Living Abroad".....
