Anyone newly diagnosed & never had a biopsy done?

[Guest guest]

Hello,

I've had the privilege of meeting Tracey and Zavie in Dec and now

enjoy following the emails that go on, I never knew the website

existed before.

I was diagonsed with CML Nov/07 and started Gleevec Jan/08 but I only

have the DNA testing done every 3 months, and have never had a biopsy

(BMA). Just wondering if this the new practice for others as well?

I have my meeting with the Dr's nurse on Friday and would love some

feedback.

Thanks.

[Guest guest]

>

> Hello,

>

> I've had the privilege of meeting Tracey and Zavie in Dec and now

> enjoy following the emails that go on, I never knew the website

> existed before.

>

> I was diagonsed with CML Nov/07 and started Gleevec Jan/08 but I only

> have the DNA testing done every 3 months, and have never had a biopsy

> (BMA). Just wondering if this the new practice for others as well?

> I have my meeting with the Dr's nurse on Friday and would love some

> feedback.

>

>

> Thanks.

>

Hi: I have to ask, how did they find your CML? I just went for my

routine blood work, and my White Count was on the high side. They

repeated it a few weeks later, and it had gone even higher. A BMB was

ordered immediately to see what was going on before the Oncologist

would even give me a diagnosis. What kind of other testing did they do?

Are they just doing FISH test? Did you get a PCR. I had biopsies, and

fish tests up until I was in remission which was 9 months after

starting my Gleevec. Then they started monitoring me on my PCR's

I know one woman who said that her doctor told her that this is a

new age, and things are done differently. He did not do a biopsy on

her either. I am sure Zavie and Tracey would agree with me. Did you

tell them this when you met them? I am monitored every 3 months, and I

get a PCR test every 6 months. I have been doing this since 1998.

Welcome to the group.

[Guest guest]

Welcome to the group.Today things are done a little different,don't get to far

away from the basics.Biopsy really are not necessary with today's test.

________________________________

From: suzzienovember <suzzienovember@...>

Sent: Sunday, January 25, 2009 5:55:01 PM

Subject: [ ] Re: Anyone newly diagnosed & never had a biopsy done?

>

> Hello,

>

> I've had the privilege of meeting Tracey and Zavie in Dec and now

> enjoy following the emails that go on, I never knew the website

> existed before.

>

> I was diagonsed with CML Nov/07 and started Gleevec Jan/08 but I only

> have the DNA testing done every 3 months, and have never had a biopsy

> (BMA). Just wondering if this the new practice for others as well?

> I have my meeting with the Dr's nurse on Friday and would love some

> feedback.

>

>

> Thanks.

>

Hi: I have to ask, how did they find your CML? I just went for my

routine blood work, and my White Count was on the high side. They

repeated it a few weeks later, and it had gone even higher. A BMB was

ordered immediately to see what was going on before the Oncologist

would even give me a diagnosis. What kind of other testing did they do?

Are they just doing FISH test? Did you get a PCR. I had biopsies, and

fish tests up until I was in remission which was 9 months after

starting my Gleevec. Then they started monitoring me on my PCR's

I know one woman who said that her doctor told her that this is a

new age, and things are done differently. He did not do a biopsy on

her either. I am sure Zavie and Tracey would agree with me. Did you

tell them this when you met them? I am monitored every 3 months, and I

get a PCR test every 6 months. I have been doing this since 1998.

Welcome to the group.

[Guest guest]

Hi ,

I'm glad you joined the group. I hope you'll get whatever you need

from it, whether that be support, information or just company knowing

that others understand what living with CML is like.

I hope others who were diagnosed in the last year will answer your

question about biopsies/aspirations. I suspect that you won't find

too many who didn't have one at least on diagnosis though.

According to the latest information that was put out by the experts

in Dec 2008. The official protocol is still to have a biopsy on

diagnosis and every 6 months thereafter until a CCR is reached (CCR

is when the biopsy comes back with no Philadelphia chromosomes

present).

The exact quote from the article reads:

" Complete blood counts should be performed at least weekly until they

have stabilized, with greater intervals thereafter. Once CHR has been

documented, monitoring continues with karyotyping of at least 20 bone

marrow metaphases, which is currently recommended at 6, 12, and 18

months, or until CCyR has been achieved. "

Complete blood counts are regular blood tests that count your white

cells, red cells etc. CHR is a Complete Hematological Response which

is when your blood counts all return to normal and karyotyping is

what they do with bone marrow samples using either an aspiration or a

biopsy. A CCyR is another way of saying CCR which is a Complete

Cytogenetic Response.

You can read the entire article here:

http://tinyurl.com/63ebdw

If you click on the chart (which you can also see from clicking on

http://tinyurl.com/aqo6qs ), you'll see that PCR tests aren't even

recommended until CCR and FISH tests aren't recommended at all unless

a diagnosis is uncertain because no Philadelphia chromosomes were

found in the biopsy/aspiration.

The other issue I hope others will chime in on is how often they

actually see their doctor. As I understand, you hardly ever actually

see your doctor, instead you always see the doctor's nurse. I know

when I go, I always see my actual doctor (every 3 months). In fact,

I have never once seen my doctor's nurse and in fact, don't even know

if she has one.

Take care and welcome to the group,

Tracey

>

> Hello,

>

> I've had the privilege of meeting Tracey and Zavie in Dec and now

> enjoy following the emails that go on, I never knew the website

> existed before.

>

> I was diagonsed with CML Nov/07 and started Gleevec Jan/08 but I

only

> have the DNA testing done every 3 months, and have never had a

biopsy

> (BMA). Just wondering if this the new practice for others as

well?

> I have my meeting with the Dr's nurse on Friday and would love some

> feedback.

>

>

> Thanks.

>