Re: Please Read,

January 19, 2007

:

That's seems a little unusual, because if the Gleevec loses it efficacy,

there are other drugs including

Sprycel, that are alternatives to Gleevec. In fact, Sprycel is considered

much more powerful than Gleevec. You probably know this already.

However, I was asked early in my treatment to go to a BMT center and be

tested, which I did. It was found that my brother is a donor match and if

needed, I could have a BMT. The transplant doctor did not recommend a BMT, in

fact

she counseled me against it. She said that Gleevec was the front line

therapy and that I should stay on that as long as I can.

If he is only doing it for testing purposes, then you may at least determine

your options. However, I would be very careful in considering a BMT,

especially since you have responded to Gleevec.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 1/19/2007 5:13:52 P.M. Eastern Standard Time,

formiga101@... writes:

Hello my name is , I don't post often but I read everyone's

post. I am 25 years old and I was diagnosed with CML in November

2003. I have been taking Gleevec 400mg since the day I was diagnosed.

Not to many side affects bone pain in the beginning but that went away

after about 2 years. I get a little sick sometimes after taking

Gleevec but nothing to major. My PCR has been good since January 2006,

and continue to look good. I went in for my 4 month appt. and my

doctor is pushing me to talk to the transplant specialist in case the

Gleevec stops working. They have already called me back today to set

up an appt. to talk about the procedures of transplant and to get my

siblings testes. I am very scared and confused and not sure what to

do. I would to hear your comments.

DX 2003, at the age of 22

January 19, 2007

Hi ,

My name is Lynn, and I was diagnosed with CML a month after you in

December, 2003. I am now 44.

You know what? My first Hem/Onc really pushed me for transplant

too. Although I was doing fabulously on Gleevec, he was very old

school, and didn't believe that Gleevec could give me durable, long

term results.

I had my siblings tested, and neither were acceptable matches. I

also had a consult at the Fred Hutchinson Center, in Seattle, near

where I live. They gave me the pro's and cons of the procedure, and

later, after returning, I wrote a huge list of pros vs. cons on a

piece of paper. It not only had to do with health, but insurance,

living arrangments, spouse, children, caretakers, pets and lots and

lots of money. For myself, the cons ran off the page.

When you go to a transplant center, they are going to push for what

they do, transplants. Plain and simple, they are a business first.

My first Hem/Onc and I really had it out one day, when I told him I

was making a choice NOT to have a tranpslant. He demanded that I

do, and when I flat out refused, he yelled at me and reamed me and

put me to tears. He refused to look at any data that I had gathered

about mortality rates of transplant vs Gleevec! I walked out of his

office, and when he said, " Where are you going? " I said, " I'm

leaving and I'm FIRING YOU! " .. 3 months later, he retired!

If you haven't spoken and had a consultation with a notable CML

specialist, I would suggest you start there.

I realize you are quite young to be diagnosed with such a sucky long

term disease, like CML, but you have many choices available to you.

Think long and hard.

Hopefully, you will get much more input from the others on this

list.

Sincerely and best wishes,

Lynn (Snickersunny)

Dx'd 12/03

PCRU

>

> Hello my name is , I don't post often but I read everyone's

> post. I am 25 years old and I was diagnosed with CML in November

> 2003. I have been taking Gleevec 400mg since the day I was

diagnosed.

> Not to many side affects bone pain in the beginning but that went

away

> after about 2 years. I get a little sick sometimes after taking

> Gleevec but nothing to major. My PCR has been good since January

2006,

> and continue to look good. I went in for my 4 month appt. and my

> doctor is pushing me to talk to the transplant specialist in case

the

> Gleevec stops working. They have already called me back today to

set

> up an appt. to talk about the procedures of transplant and to get

my

> siblings testes. I am very scared and confused and not sure what

to

> do. I would to hear your comments.

>

> DX 2003, at the age of 22

>

January 19, 2007

ANDREA THE BMT IS NOT A SLAM DUNK,THER HAS BEEN MANY POST OF DEATH FROM

BMT.DON'T CROSS THE BRIDGE UNTIL YOU HAVE TO.SEEMS TO ME STAY WHERE YOU ARE.GOOD

LUCK PAUL TN. DXT DEC23 06 STILL 3% ON LAST TEST

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