RE: Re: Confused test results

[Guest guest]

Wow. I must say that the amount of people who have to question PCR results is

crazy! (I being one of them!!!).

I dream of a day when there is a standardized formula for figuring this all out

so that we dont all have to keep bugging Marcos, and Zavie!! Thanks so

much to all of the people who always answer these PCR test results questions

from the rest of us!

Regards

@...: timothyfarley16@...: Thu, 17 Jan 2008

00:05:38 +0000Subject: [ ] Re: Confused test results

>> My PCR results

today said my BCR/ABL is .026% my previous test in Oct > was .068%. In terms of

log reduction am I right in presuming this is > kinda like a half log reduction?

I am 6 mos on Gleevec so how am I > doing?> Donna>Well I would say very well but

just to make sure you have the numbers right.Did you have a PCR done at the time

of diagnosis? If so, what was the % then?It can depend on the lab and how their

numbers compare to others but reaching a level of 0.05% or therabouts is

considered to have achieved a Major Molecular Response. To have reached this

after only 6 months is rare and a very good indicator that your CML will remain

controlled for years to come.Well done!

_________________________________________________________________

Get the power of Windows + Web with the new Windows Live.

http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008

[Guest guest]

The numbers given by the pcr are not interpretable without the

baseline value that varies quite a bit from lab to lab. At Stanford

the baseline is 1.04, and it is around 10 in some labs. The decimal

number on the pcr test corresponds to a ratio (# copies of bcr-abl

gene divided by # copies of some other gene present on all blood

cells) so it is not incorrect mathematically to display it as a % (x

100) but it is not the actual ratio of cml cells in your blood, and it

depends on the way the lab do the test. I made the same mistake the

first time I got mine, along with my hemato ...

The 3 log reduction that is used to define major molecular remission

is log(# bcr/abl / baseline) < -3

On my lab report I have the # of bcr/abl copies, the ratio # of

bcr/abl copies / # standard gene, the baseline value and the log

reduction from the baseline.

A standardization is supposed to be on the way.

Marcos.

On Jan 16, 2008 5:53 PM, Cervera <weez_555@...> wrote:

>

>

>

>

>

> Wow. I must say that the amount of people who have to question PCR results

> is crazy! (I being one of them!!!).

> I dream of a day when there is a standardized formula for figuring this all

> out so that we dont all have to keep bugging Marcos, and Zavie!!

> Thanks so much to all of the people who always answer these PCR test results

> questions from the rest of us!

>

> Regards

>

>

> @...: timothyfarley16@...: Thu, 17 Jan

> 2008 00:05:38 +0000Subject: [ ] Re: Confused test results

>

>

> >> My PCR

> results today said my BCR/ABL is .026% my previous test in Oct > was .068%.

> In terms of log reduction am I right in presuming this is > kinda like a

> half log reduction? I am 6 mos on Gleevec so how am I > doing?> Donna>Well I

> would say very well but just to make sure you have the numbers right.Did you

> have a PCR done at the time of diagnosis? If so, what was the % then?It can

> depend on the lab and how their numbers compare to others but reaching a

> level of 0.05% or therabouts is considered to have achieved a Major

> Molecular Response. To have reached this after only 6 months is rare and a

> very good indicator that your CML will remain controlled for years to

> come.Well done!

>

> __________________________________________________________

> Get the power of Windows + Web with the new Windows Live.

> http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008

>

>

>

[Guest guest]

Hi Marcos,

The field of PCR testing is still very muddled. Even more muddled is how PCR

results are reported. Some labs report PCR results as a log reduction and I

consider this way of reporting best for me. But it requires two pieces of

information that are crucial in order to interpret the results.

1. You need to know what the PCR value was at diagnosis time. Since almost

all patients don't have a PCR test done at diagnosis time, some value has to

be assumed in order to compare subsequent results. Each lab has come up with

its own average value at diagnosis time. Once this is established, you can

compare each subsequent PCR test to this initial value and calculate the log

reduction.

2. You need to know what the sensitivity of the PCR test is at the lab doing

the testing. These are reported as being able to detect 1 in x number of

cells, where x can be anything from 1,000 to 1,000,000 cells.

I have had PCR testing done at several labs and the results have been wildly

different. My best story to illustrate this point is a PCR test that I had

done at the Royal Hospital in Montreal. The PCR result came back as

PCRU, undetectable. You would think one would be thrilled at this result.

Since I was no where close to PCRU at any other lab (and still not there

today) I investigated as what the sensitivity of the PCR test was at the

RVH. It turned out to be 1 in 1,000 cells. Not that much more sensitive than

a FISH test.

For the past two years I have had my PCR testing done at both the Ottawa

General Hospital in Ottawa and the Princess Margaret Hospital in Toronto.

Although I'm told that both labs have a sensitivity of 1 in 100,000 cells,

the results are quite different. PMH will report a 3 log reduction and the

Ottawa General will report greater than a 4 log reduction for the same

sample.

For the past 2 years I have the PCR tests done at PMH and every once in a

while I get it done at the Ottawa General just to see if the numbers are the

same.

I believe that it will be years before PCR tests are standardized. If we

can't get it standardized for one country, what are the chances it will

happen world wide in the near future.

Once you find a lab that does reliable, sensitive PCRs, stick with it and

hope that they don't change their procedure along the way.

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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of Marcos

Perreau Guimaraes

Sent: January 17, 2008 1:41 AM

Subject: Re: [ ] Re: Confused test results

The numbers given by the pcr are not interpretable without the

baseline value that varies quite a bit from lab to lab. At Stanford

the baseline is 1.04, and it is around 10 in some labs. The decimal

number on the pcr test corresponds to a ratio (# copies of bcr-abl

gene divided by # copies of some other gene present on all blood

cells) so it is not incorrect mathematically to display it as a % (x

100) but it is not the actual ratio of cml cells in your blood, and it

depends on the way the lab do the test. I made the same mistake the

first time I got mine, along with my hemato ...

The 3 log reduction that is used to define major molecular remission

is log(# bcr/abl / baseline) < -3

On my lab report I have the # of bcr/abl copies, the ratio # of

bcr/abl copies / # standard gene, the baseline value and the log

reduction from the baseline.

A standardization is supposed to be on the way.

Marcos.

On Jan 16, 2008 5:53 PM, Cervera <weez_555hotmail (DOT)

<mailto:weez_555%40hotmail.com> com> wrote:

>

>

>

>

>

> Wow. I must say that the amount of people who have to question PCR results

> is crazy! (I being one of them!!!).

> I dream of a day when there is a standardized formula for figuring this

all

> out so that we dont all have to keep bugging Marcos, and Zavie!!

> Thanks so much to all of the people who always answer these PCR test

results

> questions from the rest of us!

>

> Regards

>

>

> groups (DOT) <mailto:%40From> comFrom:

timothyfarley16@ <mailto:timothyfarley16%40Date> Date:

Thu, 17 Jan

> 2008 00:05:38 +0000Subject: [ ] Re: Confused test results

>

>

> >> My PCR

> results today said my BCR/ABL is .026% my previous test in Oct > was

..068%.

> In terms of log reduction am I right in presuming this is > kinda like a

> half log reduction? I am 6 mos on Gleevec so how am I > doing?> Donna>Well

I

> would say very well but just to make sure you have the numbers right.Did

you

> have a PCR done at the time of diagnosis? If so, what was the % then?It

can

> depend on the lab and how their numbers compare to others but reaching a

> level of 0.05% or therabouts is considered to have achieved a Major

> Molecular Response. To have reached this after only 6 months is rare and a

> very good indicator that your CML will remain controlled for years to

> come.Well done!

>

> __________________________________________________________

> Get the power of Windows + Web with the new Windows Live.

> http://www.windowsl

<http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008>

ive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008

>

>

>

[Guest guest]

So even 's oncologist doesnt understand all of this, we didnt expect that

she would. In the appt with her today she kept explaining she mostly just will

continue to look for positive trends. As long as 's PCR tests keep

progessing in a " positive " manner, the numbers getting smaller and smaller, that

is considered " good " . (Sorry for the very " vanilla " , " blah " terms!).

So--if we want to really get the answer we are looking for, I believe we need to

determine:

1. What lab is doing the actual bloodwork?

2. What is their sensitivity of the PCR test? Are they testing for 1 in 1000 or

1 in 1,000,000...etc?

So, if we are part of the Kaiser Permanente Health Network of Southern

California, we need to get the name of the lab processing the PCRs? Wow--how do

we go about that? I guess first we would start by calling the Kaiser lab and

asking who they outsource PCR tests to? And, is " PCR test " the buzz words we

should use, or do lab workers know them as different terms? We know that the

Bone Marrow Biopsies has had are done by City of Hope Cancer Center...that

is who Kaiser outsources them to. I wonder if they, too, do the PCR tests?

And, once we get the name of the lab, we need to figure out how to call them,

and who to talk to, I assume this is someone higher up in the chain of command

and not just a lab technician?

It is difficult when your whole life is spent waiting for test results. Then

when you get the results, it turns out they dont really mean anything, because

you dont have enough info to really determine the results! And even more

frustrating, the professionals (the docs/nurses), also dont know how to

interpret all of this!!!

Urggghhh!

@...: zmiller@...: Thu, 17 Jan 2008

10:48:59 -0500Subject: RE: [ ] Re: Confused test results

Hi Marcos,The field of PCR testing is still very muddled. Even more muddled is

how PCRresults are reported. Some labs report PCR results as a log reduction and

Iconsider this way of reporting best for me. But it requires two pieces

ofinformation that are crucial in order to interpret the results.1. You need to

know what the PCR value was at diagnosis time. Since almostall patients don't

have a PCR test done at diagnosis time, some value has tobe assumed in order to

compare subsequent results. Each lab has come up withits own average value at

diagnosis time. Once this is established, you cancompare each subsequent PCR

test to this initial value and calculate the logreduction.2. You need to know

what the sensitivity of the PCR test is at the lab doingthe testing. These are

reported as being able to detect 1 in x number ofcells, where x can be anything

from 1,000 to 1,000,000 cells.I have had PCR testing done at several labs and

the results have been wildlydifferent. My best story to illustrate this point is

a PCR test that I haddone at the Royal Hospital in Montreal. The PCR

result came back asPCRU, undetectable. You would think one would be thrilled at

this result.Since I was no where close to PCRU at any other lab (and still not

theretoday) I investigated as what the sensitivity of the PCR test was at

theRVH. It turned out to be 1 in 1,000 cells. Not that much more sensitive thana

FISH test.For the past two years I have had my PCR testing done at both the

OttawaGeneral Hospital in Ottawa and the Princess Margaret Hospital in

Toronto.Although I'm told that both labs have a sensitivity of 1 in 100,000

cells,the results are quite different. PMH will report a 3 log reduction and

theOttawa General will report greater than a 4 log reduction for the

samesample.For the past 2 years I have the PCR tests done at PMH and every once

in awhile I get it done at the Ottawa General just to see if the numbers are

thesame.I believe that it will be years before PCR tests are standardized. If

wecan't get it standardized for one country, what are the chances it willhappen

world wide in the near future.Once you find a lab that does reliable, sensitive

PCRs, stick with it andhope that they don't change their procedure along the

way.ZavieZavie (age 69)67 Shoreham AvenueOttawa, Canada, K2G 3X3 dxd

AUG/99INF OCT/99 to FEB/00, CHFNo meds FEB/00 to JAN/01Gleevec since MAR/27/01

(400 mg)CCR SEP/01. #102 in Zero Club2.8 log reduction Sep/053.0 log reduction

Jan/062.9 log reduction Feb/073.2 log reduction Jun/073.6 log reduction

Sep/07e-mail: zmiller@...: 613-726-1117Fax: 309-296-0807Cell:

613-202-0204 ID: zaviem_____ From:

[mailto: ] On Behalf Of MarcosPerreau GuimaraesSent: January

17, 2008 1:41 AM@...: Re: [ ] Re: Confused test

resultsThe numbers given by the pcr are not interpretable without thebaseline

value that varies quite a bit from lab to lab. At Stanfordthe baseline is 1.04,

and it is around 10 in some labs. The decimalnumber on the pcr test corresponds

to a ratio (# copies of bcr-ablgene divided by # copies of some other gene

present on all bloodcells) so it is not incorrect mathematically to display it

as a % (x100) but it is not the actual ratio of cml cells in your blood, and

itdepends on the way the lab do the test. I made the same mistake thefirst time

I got mine, along with my hemato ...The 3 log reduction that is used to define

major molecular remissionis log(# bcr/abl / baseline) < -3On my lab report I

have the # of bcr/abl copies, the ratio # ofbcr/abl copies / # standard gene,

the baseline value and the logreduction from the baseline.A standardization is

supposed to be on the way.Marcos.On Jan 16, 2008 5:53 PM, Cervera

<weez_555hotmail (DOT) <mailto:weez_555%40hotmail.com> com> wrote:>>>>>> Wow. I must

say that the amount of people who have to question PCR results> is crazy! (I

being one of them!!!).> I dream of a day when there is a standardized formula

for figuring thisall> out so that we dont all have to keep bugging Marcos,

and Zavie!!> Thanks so much to all of the people who always answer these

PCR testresults> questions from the rest of us!>> Regards> >> To:

groups (DOT) <mailto:%40From> comFrom:timothyfarley16@

<mailto:timothyfarley16%40Date> Date:Thu, 17 Jan> 2008

00:05:38 +0000Subject: [ ] Re: Confused test results>>> >> My PCR> results today said my BCR/ABL is

..026% my previous test in Oct > was.068%.> In terms of log reduction am I right

in presuming this is > kinda like a> half log reduction? I am 6 mos on Gleevec

so how am I > doing?> Donna>WellI> would say very well but just to make sure you

have the numbers right.Didyou> have a PCR done at the time of diagnosis? If so,

what was the % then?Itcan> depend on the lab and how their numbers compare to

others but reaching a> level of 0.05% or therabouts is considered to have

achieved a Major> Molecular Response. To have reached this after only 6 months

is rare and a> very good indicator that your CML will remain controlled for

years to> come.Well done!>>

__________________________________________________________> Get the power of

Windows + Web with the new Windows Live.>

http://www.windowsl<http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindo\

ws_012008>ive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008>>> [Non-text

portions of this message have been removed]>>>> -- Marcos Perreau

GuimaraesSuppes Brain LabVentura Hall - CSLIStanford University220 Panama

streetStanford CA 94305-4101650 614 2305650 630 5015 (cell)marcospgcsli (DOT)

<mailto:marcospg%40csli.stanford.edu> stanford.edumontereyunderwater@

<mailto:montereyunderwater%40gmail.com>

gmail.comwww.stanford.edu/~marcospg/[Non-text portions of this message have been

removed]

_________________________________________________________________

Shed those extra pounds with MSN and The Biggest Loser!!

http://biggestloser.msn.com/

[Guest guest]

Hi ,

The simplest way is to ask for a copy of your results. It will have all the

information that you need. Make sure that you get a copy each time. Once you

have two reports side by side, you can easily see what is going on.

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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

Cervera

Sent: January 17, 2008 3:25 PM

Subject: RE: [ ] Re: Confused test results

So even 's oncologist doesnt understand all of this, we didnt expect

that she would. In the appt with her today she kept explaining she mostly

just will continue to look for positive trends. As long as 's PCR tests

keep progessing in a " positive " manner, the numbers getting smaller and

smaller, that is considered " good " . (Sorry for the very " vanilla " , " blah "

terms!).

So--if we want to really get the answer we are looking for, I believe we

need to determine:

1. What lab is doing the actual bloodwork?

2. What is their sensitivity of the PCR test? Are they testing for 1 in 1000

or 1 in 1,000,000...etc?

So, if we are part of the Kaiser Permanente Health Network of Southern

California, we need to get the name of the lab processing the PCRs? Wow--how

do we go about that? I guess first we would start by calling the Kaiser lab

and asking who they outsource PCR tests to? And, is " PCR test " the buzz

words we should use, or do lab workers know them as different terms? We know

that the Bone Marrow Biopsies has had are done by City of Hope Cancer

Center...that is who Kaiser outsources them to. I wonder if they, too, do

the PCR tests?

And, once we get the name of the lab, we need to figure out how to call

them, and who to talk to, I assume this is someone higher up in the chain of

command and not just a lab technician?

It is difficult when your whole life is spent waiting for test results. Then

when you get the results, it turns out they dont really mean anything,

because you dont have enough info to really determine the results! And even

more frustrating, the professionals (the docs/nurses), also dont know how to

interpret all of this!!!

Urggghhh!

groups (DOT) <mailto:%40From> comFrom:

zmillersympatico (DOT) <mailto:zmiller%40sympatico.caDate> caDate: Thu, 17 Jan

2008 10:48:59 -0500Subject: RE: [ ] Re: Confused test results

Hi Marcos,The field of PCR testing is still very muddled. Even more muddled

is how PCRresults are reported. Some labs report PCR results as a log

reduction and Iconsider this way of reporting best for me. But it requires

two pieces ofinformation that are crucial in order to interpret the

results.1. You need to know what the PCR value was at diagnosis time. Since

almostall patients don't have a PCR test done at diagnosis time, some value

has tobe assumed in order to compare subsequent results. Each lab has come

up withits own average value at diagnosis time. Once this is established,

you cancompare each subsequent PCR test to this initial value and calculate

the logreduction.2. You need to know what the sensitivity of the PCR test is

at the lab doingthe testing. These are reported as being able to detect 1 in

x number ofcells, where x can be anything from 1,000 to 1,000,000 cells.I

have had PCR testing done at several labs and the results have been

wildlydifferent. My best story to illustrate this point is a PCR test that I

haddone at the Royal Hospital in Montreal. The PCR result came back

asPCRU, undetectable. You would think one would be thrilled at this

result.Since I was no where close to PCRU at any other lab (and still not

theretoday) I investigated as what the sensitivity of the PCR test was at

theRVH. It turned out to be 1 in 1,000 cells. Not that much more sensitive

thana FISH test.For the past two years I have had my PCR testing done at

both the OttawaGeneral Hospital in Ottawa and the Princess Margaret Hospital

in Toronto.Although I'm told that both labs have a sensitivity of 1 in

100,000 cells,the results are quite different. PMH will report a 3 log

reduction and theOttawa General will report greater than a 4 log reduction

for the samesample.For the past 2 years I have the PCR tests done at PMH and

every once in awhile I get it done at the Ottawa General just to see if the

numbers are thesame.I believe that it will be years before PCR tests are

standardized. If wecan't get it standardized for one country, what are the

chances it willhappen world wide in the near future.Once you find a lab that

does reliable, sensitive PCRs, stick with it andhope that they don't change

their procedure along the way.ZavieZavie (age 69)67 Shoreham

AvenueOttawa, Canada, K2G 3X3 dxd AUG/99INF OCT/99 to FEB/00, CHFNo meds

FEB/00 to JAN/01Gleevec since MAR/27/01 (400 mg)CCR SEP/01. #102 in Zero

Club2.8 log reduction Sep/053.0 log reduction Jan/062.9 log reduction

Feb/073.2 log reduction Jun/073.6 log reduction Sep/07e-mail:

zmillersympatico (DOT) <mailto:zmiller%40sympatico.caTel> caTel:

613-726-1117Fax: 309-296-0807Cell: 613-202-0204 ID: zaviem_____ From:

groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

MarcosPerreau GuimaraesSent: January 17, 2008 1:41 AMgroups (DOT)

<mailto:%40Subject> comSubject: Re: [ ] Re: Confused

test resultsThe numbers given by the pcr are not interpretable without

thebaseline value that varies quite a bit from lab to lab. At Stanfordthe

baseline is 1.04, and it is around 10 in some labs. The decimalnumber on the

pcr test corresponds to a ratio (# copies of bcr-ablgene divided by # copies

of some other gene present on all bloodcells) so it is not incorrect

mathematically to display it as a % (x100) but it is not the actual ratio of

cml cells in your blood, and itdepends on the way the lab do the test. I

made the same mistake thefirst time I got mine, along with my hemato ...The

3 log reduction that is used to define major molecular remissionis log(#

bcr/abl / baseline) < -3On my lab report I have the # of bcr/abl copies, the

ratio # ofbcr/abl copies / # standard gene, the baseline value and the

logreduction from the baseline.A standardization is supposed to be on the

way.Marcos.On Jan 16, 2008 5:53 PM, Cervera

<weez_555hotmail (DOT) <mailto:weez_555%40hotmail.com> com> wrote:>>>>>> Wow. I

must say that the amount of people who have to question PCR results> is

crazy! (I being one of them!!!).> I dream of a day when there is a

standardized formula for figuring thisall> out so that we dont all have to

keep bugging Marcos, and Zavie!!> Thanks so much to all of the

people who always answer these PCR testresults> questions from the rest of

us!>> Regards> >> groups (DOT)

<mailto:%40From> comFrom:timothyfarley16@

<mailto:timothyfarley16%40Date> Date:Thu, 17 Jan> 2008

00:05:38 +0000Subject: [ ] Re: Confused test results>>> >> My PCR> results today said my BCR/ABL is

..026% my previous test in Oct > was.068%.> In terms of log reduction am I

right in presuming this is > kinda like a> half log reduction? I am 6 mos on

Gleevec so how am I > doing?> Donna>WellI> would say very well but just to

make sure you have the numbers right.Didyou> have a PCR done at the time of

diagnosis? If so, what was the % then?Itcan> depend on the lab and how their

numbers compare to others but reaching a> level of 0.05% or therabouts is

considered to have achieved a Major> Molecular Response. To have reached

this after only 6 months is rare and a> very good indicator that your CML

will remain controlled for years to> come.Well done!>>

__________________________________________________________> Get the power of

Windows + Web with the new Windows Live.>

http://www.windowsl<http://www.windowsl

<http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008>

ive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008>ive.com?ocid=TXT_TAGHM_Wa

ve2_powerofwindows_012008>>> [Non-text portions of this message have been

removed]>>>> -- Marcos Perreau GuimaraesSuppes Brain LabVentura Hall -

CSLIStanford University220 Panama streetStanford CA 94305-4101650 614

2305650 630 5015 (cell)marcospgcsli (DOT) <mailto:marcospg%40csli.stanford.edu>

stanford.edumontereyunderwater@ <mailto:montereyunderwater%40gmail.com>

gmail.comwww.stanford.edu/~marcospg/[Non-text portions of this message have

been removed]

__________________________________________________________

Shed those extra pounds with MSN and The Biggest Loser!!

http://biggestloser <http://biggestloser.msn.com/> .msn.com/