Re: Tim -Susie

[Guest guest]

Dear Susie,

I am a " long time " CMLer. I don't post here as often as I used to. I

am currently on the BMS trial in Montreal. I started in March 2005.

I noticed you mentioned that you'd heard that AMN " is more chemo

based " . I am curious about what that means. My understanding was

that AMN 107 is a " second generation " Glivec -like compound also made

by Novartis that is 20 times more potent Glivec itself. It too is an

oral based therapy as is BMS which is 100 times more potent but works

on 2 main pathways versus AMN and Glivec that work on one main

pathway. So I wonder if you can share with us what you might find out

about it being more chemo based. I am considering it as an

alternative to BMS if I continue to be unable to get a response.

You have certainly faced many challenges already with your CML. I am

so surprised that Dr. told you to " get your life in order "

when you were first diagnosed particularly given all the data pouring

in about the success of Glivec by Nov. 2002 and given he is a CML

expert. It's a good thing you seem to be such a strong person. I

can't imagine being told that. I was very lucky that my doc took an

optimistic approach with my diagnosis in Nov. 1998 when I was 39 with

an 11 year old and a 14 year old and there was no Glivec.

Like you I have had many problems staying on therapies due to side

effects. I tried inteferon, interferon plus cytarabine, Glivec for 4

years, a vaccine and now the BMS drug. Over seven years trying to

unload these Ph+ cells! As you are discovering, it's not easy but it

can be done! Lucky for us, there are researchers out there making good

headway with CML. And we can only hope they will soon get past

prolonging our lives to actually curing them so we don't have to face

long term toxicity issues. I worry about over 7 years of pumping

toxic stuff in so far but I am so grateful to still be here!

I hope that Dr. is able to get you access to the trial to give

AMN a try and see if that is more tolerable for you. And though a BMT

may be your least favourite route, I do envy you your

matching sibling. I have 5 sibs and not one matched.

Wishing you peace, love and everything good,

dx 11/98

>

> Thaks for that Jackie, yeah i was worried about that, Tim mentioned

> about it being so much

> stronger, that his concern about me going on it. And also

> about being on Gleevec too long that is also a concern. It gets me

> how the doctors change thier minds..hehe...When first diagnosed Tim

> said 'get your life in order as you may have three years in chronic'

> then the next year he said...'good news, gleevec will keep me in

> chronic at at least another 5 years ...but remember you've lived 2

> of them' then last week he said..'good news for people on gleevec,

> it looks like we can keep peopele in chronic for a good 20 years

> maybe..' heheh im confused...but then i guess we put our trust in

> them and they know best. The only thing that bothers me, is once

> when Tim was away I saw DOCTOR HOIH, HE IS THE LEADING TRANSPLANT

> PROFESSOR IN SA.. one day i went to him very confident as i was near

> the end of my first year...and his words (he was asian) 'what, you

> think if you take gleevec for 10 years it will keep you alive,

> I don't think you young patients realise what a toxic drug Glivec

> is. what will happen to your young bodies in 10 or 20 years? The

> CML might not kill you but the toxic from Glivec might' ..with all

> that my heart sank, i felt like i was kicked in the guts by a

> horse...so sometimes that is in the back of my mind....but hey they

> are always improving drugs...so lets hope, pray and fingers crossed.

>

> susie leech

> dx nov 2002

> currently off gleevec