People still on 400mg and still doing well after a long time

[Guest guest]

Hi and Everyone,

There's a good number of us who have been on 400mg Gleevec and done

well for several years without having to increase our dose. Zazzy and

Zavie have already posted but there's also myself (6 years) and a whack

of others too.

Keep in mind that people who do really well typically tend not to post

(mostly because they have no need to do so) so there are LOTS of people

out there who are doing very well on just 400mgs....in fact, I would

say the majority fit into this category.

Tracey

[Guest guest]

lisa whats PCRU?

aliza

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

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[Guest guest]

I have been on 400 mgs of Gleevec since FDA approval - June 2001 and still

PCRU

ez

[Guest guest]

Hi,

It stands for PCR Undetectable.

PCR is the name of a very sensitive test for CML. It can detect 1 CML cell

in 1,000,000.

There is a lot more to it, but for the meantime this is all you need to

know. Being PCRU doesn't mean that you still don't have CML.

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

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

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

3.5 log reduction Feb/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

taina2044@...

Sent: March 10, 2008 12:21 PM

Subject: Re: [ ] Re:People still on 400mg and still doing well after a

long time

lisa whats PCRU?

aliza

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money. <http://money.aol.com/tax?NCID=aolprf00030000000001>

aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

had mentioned there'a alot of CML people that don't post because it's not

necessary because they are doing so well on Gleevec. I am one of those. I don't

post but I certainly read it all. I thank God every day that I don't have the

horrible side effects that some people have. I lead a normal life and havent'

missed any work. I have been on Gleevec for 2 yrs now. In the beginning, it was

awful getting adjusted. I felt flu like, worn down and weak. This lastest maybe

a few weeks. After that I was fine.

Gleevec is a miracle and I look forward to every day that I feel good!

I wish the best for everyone that is experiencing side effects.

Pam

ez <lmartinez@...> wrote:

I have been on 400 mgs of Gleevec since FDA approval - June 2001 and

still

PCRU

ez

[Guest guest]

I don't post much but have been mostly on 300mg. of Gleevec since July

2001 and remain undetectable through PCR. I have not tolerated 400mg.

well (I tried 400 and higher, with nausea,fatigue,and at times low

blood counts). Something else that might be of interest is that the new

Gleevec blood serum test showed that my Gleevec levels on 300mg is the

same as those in the middle of the range taking 400mg so for now and

for most of the last 7 years I have been on 300mg and doing well. I'm

also one of those who reads the list all the time, but doesn't write

much.

Fran from Alaska

Diagnosed 1999

Interferon 'til May 2001 when Gleevec was approved

Gleevec 2001-present

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[Guest guest]

When I started on Gleevec, which was still in trial, they put me on 600.

Eventually I ended up on 800, and learned to tolerate it by managing it with

the food I took. It did not work for me, I never got below 20% ph, but what it

did do was keep me alive long enough to get into the Sprycel trial, and for that

I am ever thankful. I think one of the reasons it did notwork for me was I

already had cml for 5 years before the trial, and my never reach pcru because of

the length of the time I've had it. But that's ok with me, if I can feel as

good as I do now, I don't care what the numbers say. I wish evryone could feel

this good, no matter what they are on. Bobby

fran99504 <airstrip@...> wrote: I don't post much but have been

mostly on 300mg. of Gleevec since July

2001 and remain undetectable through PCR. I have not tolerated 400mg.

well (I tried 400 and higher, with nausea,fatigue,and at times low

blood counts). Something else that might be of interest is that the new

Gleevec blood serum test showed that my Gleevec levels on 300mg is the

same as those in the middle of the range taking 400mg so for now and

for most of the last 7 years I have been on 300mg and doing well. I'm

also one of those who reads the list all the time, but doesn't write

much.

Fran from Alaska

Diagnosed 1999

Interferon 'til May 2001 when Gleevec was approved

Gleevec 2001-present

>

> I have been on 400 mgs of Gleevec since FDA approval - June 2001 and

still

> PCRU

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> ez

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