hi ive been on glivec now 4years and have been told that after 5 years its stops working !! what happens after that ?
has anybody experienced this yet? would like to know
thanks clare x
You are here
over 4 years
Clare,
Who told you this? Certainly not a doctor who has been following the IRIS trial results. The latest 6 year results show that no one has relapsed.
Clare, can you send me your email address. I have some questions for you.
Thanks,
Zavie
Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca
Hi Clare
I am very surprised that you were told that Glivec stops working after five years. As Zavie points out the IRIS results go to show the contrary. This seems to me to be a very uneducated remark and a very irresponsible comment and I do hope it didn't come from a CML doctor.
How are you doing on Glivec so far ? What is your PCR ?
Which centre are you being treated at ?
Best wishes and forget that comment as it is just not true. However, if Glivec did stop working for a reason, there are other inhibitors available like Sprycel and Tasigna which will be licenced later this year.
Elizabeth
im doing really well on it!!!i go for tests every 3 months now and my count stays the same no change .
the only reason i ask is when i first went on to gliveec i was told there is no information on how it works after five years cause it was only new ish back then !! im being treated at the wrexham maelor hosptial under dr watson and doing very well
Hello Clare
I am from Wrexham but have been living in the Isle of Man for the last seven years - I was diagnosed 6 years ago and have been on Glivec for the last 5 years.
I just wanted to let you know that I am still doing really well on Glivec 5 years on - my count thankfully still remains at zero.
All my family still live in Wrexham and I visit there a lot.
Good luck with your treatment x
Best wishes
Julie
Julie Valentine
Hi
I am just writing to say I have had the same experience as Julie - 5 years now on Glivec and no signs of it starting to fail at all. NO detecable signs of CML for some yars - each biopsy clear - So I agree with Elizabeth - ignore that comment, and talk to someone who is an expert.
good luck.
vicki h
Dear Clare, I was dx seven years ago yesterday. Went on the IRIS trial in September 2000 and drew STI 571 (Glivec). Am still on 600 mgd and its still working fine. Good luck Peter Capel
Y A H O O O !!! Y I P P E E E !!!
Number 1084 in the Zero Club
Zavie
Please send me an email. Thanks, Zavie
Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca
Hi Clare
I was born in Ruabon but lived in Johnstown before I moved over to the Isle of Man.
I go to the Royal Hospital in Liverpool for my check ups every 3 months and I usually stay near Rhos with my Mum and Dad for a few days each time I go.
Take care and good luck with your Glivec x
Best wishes
Julie
Dear Clare,
It is a shame that stories like this are told to patients. I was diagnosed almost 14 years ago and the progress in medecine has been enormous. I started Gliven almost 7 years ago on one of the early trials and it has produced tremendous results. The advice from my consultant is that as far as they know it will continue.
All the best to you
Phil & Babs
Hi Clare
Its a small world isnt it!!!
I lived in Nant Parc for 4 years.
My Brother actually lived in Brandy Brook as well!
You take care and try not to worry about anything - the people on this website are absolutely amazing and I have found that when something is worrying me if I just post a message on here usually within minutes people that have had simillar problems reply and offer solutions or explanations which is fantastic.
It also reminds me that its not just me - there are lots of people out there that are going through or have gone through the same thing and I instantly feel reassured.
We are here today thanks to the miracle that is Glivec!!!
Best wishes
Julie
Julie Valentine