hello Sandy and Elizabeth,
I dont know if youll remember me i was diagnosed in98, my name is Tom Wilson, i had my treatment in glasgow and was the first person in scotland to trial sti (glivec). I also came down to see prof goldman in 2001 where thanks to this site i was met and helped by Trish Graham. I was undergoing my second transplant when sadly trish died, it seemed to be happening a lot at that time and i found it easier to stay away, which is why you haven't heard fm me till now. Glivec saved my life, i was in blast crisis when i started the trial in oct 2000 within 3months i was back in chronic phase,i had my second transplant in dec 2001, which was succesful in the main, however i continued on glivec after my second transplant and achieved remission. The last 7-9 years have been hard, steroids that i needed for gvhd brought on necrosis in my joints and i have struggled to stay mobile, but i got a knee replacement in july and hope to get the next one soon, then i'll get new ankles, then i'll be doing a marathon!!. While i've had all theese problems over the years my pcr has been great 0.00 ,untill now, my pcr has been gradually rising and my doc is wanting to put me back on treatment. She reckons im resistant to imatinib, disatinib can lead to chest problems, and due to prev lung damage has been ruled out so it looks like i'll be going on nilotinib. Its been so long since i last dealt with any of this, i tried to put it behind me and forget it so now i find myself totally ignorant of this drug and other treatments of the day. i would be extremely grateful for any info or adice from others on this drug or anyone else in my position. Elizabeth it would be really nice to hear from you,i'm still at my old e-mail address or i can post it if you need it. for all those who dont know me my history is as follows:
I was diagnosed with cml on 1st may 1998 (chronic granulocitic leukaemia)
I had a bone marrow transplant with marrow donated from my brother on 12 dec 1998
I relapsed in jan 2000 disease came back in accelerated phase
Ihad flag chemo in june 2000 which failed and left me with a pluretic lung
I was given a prognosis of 6 weeks in oct 2000
I was given sti-571 on compssionate grounds in oct 2000 Trials were due to start in nov
I was back in chronic phase within 3months
I had a stem cell transplant with cells donated fm my sister on 6th nov 2001
I had bad gvhd after transplant and went on glivec 2002
I have been in remission since 2003
