Re: Tim -

[Guest guest]

--- In , " christine_saomiguel " <csaomiguel@...>

wrote:

>

> 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

>

>

>

>

Thankyou for you reply and kind words. I was asking

Jackie about the about AMN being more chemo based cause i had heard

it mentioned before and she had asked her doctor on Monday. He said

yes it is...but apparently as i got told by Tracey yesterday that NO

it isnt and Jackie is new and wouldnt know what she is talking

about...mmm so who do I listen to...Tracey, who may have alot of

knowledge but im open to listen to other peoples opinions to so why

shouldn't i listen to not others,or Jackie, who i know is new but

she asked her Oncolagist who is close friends with Tim and works

alongside him....So you know what in the future im not asking advise

anymore Ill go straight to Tim. (im sorry if this sounds bitchy, but

i could post the private conversation between Tracey and me and you

will understand) I asked her a simple question and she blew my head

off. I think personally its better if you have a great Onc and you

put your trust in them then thats who you should listen to. Over

time ive shared what Tim has told me and people have scold me for

it...or even as good as being called alier then i get confused whos

right...we all have the same disease but we are more than likely

will get different answers as we all have differnt Onc. Also about

having taking Gleevec for solng, I didnt in anyway meant to scare

anyone i was just sharing one of my fears that a doctor said to me

once and HEY maybe before they pump us fall of this crap we need to

look into it a bit better.

susie leech

dx nov 2002

currently off gleevec

drug free hopefully till today