Re: I'M A SURVIVOR

[Guest guest]

Hi, all,

If you would like to see a history of a teenager with CML who had a

matched unrelated donor bone marrow transplant (MUD BMT), you can go

to this site:

http://www.caringbridge.org/wi/tomneddo

Dr. Druker gave our family higher survival rate statistics for

pediatric CML patients who had a BMT. Other factors which influence

BMT survival are phase of CML at diagnosis, time since diagnosis,

age, etc. A good CML specialist will take you through all of your

options and give you all the pros and cons of each option.

K- I am certainly glad that you are surviving all of your chronic

illnesses. Best of luck to you.

M. - K's message was the one I was talking about (same message

posted Dec. 2005).

Barb Neddo,

Mom to Tom, dx CML 8/13/04, MUD BMT 5/05/05

http://www.active.com/donate/ltnBrookf/1828_BNeddoLTN

On Sep 3, 2006, at 6:57 AM, IAintFinishedYet wrote:

> Hey Group. . . I am still lurking out here and sending personal

> welcomes to the NEWBIES. I am getting the impression that the

> Hematology & Oncology Doctors are steering our Newbies to the BMTs.

> I understand that the Transplant Doctors need US as (pioneers/

> guinea pigs) to UP the statistics; but with our Gold, the AMS & BMS

> medications, the Vaccine, and new medications on the horizon. I

> personally don't feel that a BMT is the CURE that the Transplant

> Doctors have been 'tooting' it as with over 30% of us not surviving

> 3 months and over 50% not surviving 1 year.

>

> Dr. Drucker stated at the ASH Conference in December that our bug

> is truly a Chronic disease now (much like diabetes) and a newly

> diagnosed person has a 25 year median. I personally feel that the

> BMT is a 'last resort option' to be considered only when all has

> failed. GVHD is a KILLER and I personally don't want to lose

> another brother or sister, who would be SURVIVING on our Gold.

>

> BTW. . . I got the results of my 2nd RT-PCR on September 1, 2006

> and I am holding at 0.00136. I've come a long way from 800,000

> +phillies per Million and 2-5 months to live on December 18, 2003

> to " 0/Negative " on the FISH Test on January 1, 2005 to my 1st RT-

> PCR on December 27, 2005.

>

> My 18 fatal/terminal diseases. . . which I call CHRONIC ILLNESSES

> are being managed by my PCP and 5 Specialists. I have ALL in my

> prayers!

>

> I'M A SURVIVOR. . . I AIN'T FINISHED YET! ! !

>

> " K "

> " I AIN'T FINISHED YET " !!!

>

>

[Guest guest]

" K " ,

I'm with you all the way. My doc has mentioned transplants a couple of times

and I personally got the impression he was trying to drum up business for others

in his medical group. Maybe that's a bit harsh but I don't want to hear it any

more. Right now I'm doing well on Gleevec but if i needed further help i'd

definitely go to one of the fallback drug options available or soon to be from

BMS and novartis. Failing that to a clinical trial. I feel like, if we can fight

on and buy some time this thing will be beaten. I don't intend, in any way, to

live my life, or die, with a nasty case of GVHD.

Rick

IAintFinishedYet <kttweety@...> wrote:

Hey Group. . . I am still lurking out here and sending personal

welcomes to the NEWBIES. I am getting the impression that the Hematology &

Oncology Doctors are steering our Newbies to the BMTs. I understand that the

Transplant Doctors need US as (pioneers/guinea pigs) to UP the statistics; but

with our Gold, the AMS & BMS medications, the Vaccine, and new medications on

the horizon. I personally don't feel that a BMT is the CURE that the Transplant

Doctors have been 'tooting' it as with over 30% of us not surviving 3 months and

over 50% not surviving 1 year.

Dr. Drucker stated at the ASH Conference in December that our bug is truly a

Chronic disease now (much like diabetes) and a newly diagnosed person has a 25

year median. I personally feel that the BMT is a 'last resort option' to be

considered only when all has failed. GVHD is a KILLER and I personally don't

want to lose another brother or sister, who would be SURVIVING on our Gold.

BTW. . . I got the results of my 2nd RT-PCR on September 1, 2006 and I am

holding at 0.00136. I've come a long way from 800,000+phillies per Million and

2-5 months to live on December 18, 2003 to " 0/Negative " on the FISH Test on

January 1, 2005 to my 1st RT-PCR on December 27, 2005.

My 18 fatal/terminal diseases. . . which I call CHRONIC ILLNESSES are being

managed by my PCP and 5 Specialists. I have ALL in my prayers!

I'M A SURVIVOR. . . I AIN'T FINISHED YET! ! !

" K "

" I AIN'T FINISHED YET " !!!