R & the rest of the group

[Guest guest]

Hi & everyone,

Saw your post the other day about some changes in your PCR test and hope you

are doing well. I also figured it would be a good time to share SOME of my

results with you and the rest of the group.

I am 39 (40 next month) was Diagnosed in May 2000 - Interferon & ARC until

Gleevec was FDA approved.

On Gleevec since June 2001 and August 2001 PCRU

Had my biopsies almost every 90 days until 2003 when my oncologist finally

said he felt comfortable doing them every year, but I still had to do the

PCR by PB every 90 days.

In February 2004 my BMA indicated that there was a very small amount

detected In one of the 3 major break points. .1 very low. But with that my

doctor insisted I go and get another PB PCR and see if it was the same or if

it differed. So I went back to my local Cancer center here after almost 4

years of not going there and their test was negative.

We decided to believe the best.

I was scheduled for this years BMBA just this Monday and prior to my visit

my Dr asked me to go get my PCR at a different lab (Labcorp)

My results from Labcorp indicate the same major breakpoint from last year

going from .1 to .5 and now another one of the 3 is .22

It is a small amount I know but again we are thinking about the possibility

of an upward trend.

We are now going to compare the PB PCR to the BMA but the results won't be

In until around the end of next week.

To go one step further my doctor has me going back to the local center here

to use their Lab so we can compare all 3.

I think he still believes that there is a difference in the PB PCR test and

The PCR from the BMA.

My question is how the heck do we know which darn lab has accurate results?

And is it really safe to go a whole year without a BMB? I dunno???

As soon as I get my BMBA results I will post it all here so we can all try

to figure out what's going on.

Thanks

ez

Tampa Fl

Message: 6

Date: Tue, 15 Mar 2005 19:37:43 -0000

From: " gilder52 " <rrockef1@...>

Subject: Thanks, Amy

Thank you for starting this listserv, Amy. I was timely.

It's nice to see many of the old " faces " here, as well as a number of new

ones.

For those of you who don't know me from the prior CML group, I'm a 56

year old physician with CML diagnosed in 10/00, treated with IFN from 11/00

until 5/01, on Gleevec (IM) since then. I've generally been in great

remission

since 7/01.

I used to post quite a lot, but find I've had much less time for doing so

over the

past couple of years; my formerly busy life caught up with me again as my

health recovered. I still won't be able to read all the posts, but am happy

to

chime in when I can, both on CML and non- CML medical topics.

Amy, let us know if you'd like help in any way in running this site, and/or

whether you'd like our thoughts on moderating it, on setting standards and

etiquette for posts, etc.

May we grow and prosper in harmony. May we provide one another the

support and information we need to deal optimally with CML - and perhaps one

day be cured of it!

Love to all,

R

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