Re: Still Freaking Out a Little/question re PCRs/ and others

[Guest guest]

Hi ,

Going from .04 to .30 is almost a 1 log increase in the PCR value. Nothing

to be concerned about, but worth watching. I assume that the test was done

in the same lab and under the same conditions.

The COH value 8.3 x 10-5 is 0.000083. This is 1000 times better than the

MDA result. So clearly there is something amiss and he just wants to make

sure by doing a BMB. This is a good idea if indeed something is happening in

the marrow.

My attitude is very simple. First I want to find a lab that does very

sensitive and consistent PCR testing. You want to be able to compare apples

with apples.

If you are at 3 log reduction when it comes to your PCR test (i.e at . 0.01

or better) then I would not increase the dose of Gleevec to try and improve

the result. There is no evidence that you will do better in the long term if

you are less than a 3 log reduction.

My best example to justify this is Giora's experiment with Dr. Hochhaus.

Giora was in the deepest remission of anyone and the moment he went off

Gleevec, the Phillies started to come back. So what is the point of enduring

the increased side effects just to get to PCRU. There doesn't seem to be an

advantage .

On a personal note, I am still trying to get 2 consistent PCR tests back to

back so I can reliably measure any difference. I have tried, but have not

been successful.

In your shoes, I would insist on a PCR test monthly in order to track the

changes in your PCR level before asking to increase the dose.

I hope this helps,.

Zavie

[ ] Still Freaking Out a Little/question re PCRs/

and others

I hope you guys can help me out with this one. I had a PB-PCR

performed at MDACC which increased in six months from .04 to .3. The

PB-PCR was repeated at COH last week and the result was 8.3 x 10-5.

(By the way, I have no idea what that equation means...Is that more or

less than .3? Not that they can be compared realistically...) Dr.

Talpaz seems content to treat this as a possible fluctuation in

values. My doctor at COH (where I am followed locally)wants to repeat

my bone marrow and do a marrow PCR. Why would he want to do this? For

mutations testing? He only recently told me that they do perform some

mutations tests at COH but do not release the data to patients, nor do

they base any clinical treatment on the results of the tests.

I am on protocol since 4-01 at MDACC with 400 mg Gleevec. I have

prescription drug coverage and I would just as soon increase to 600mg,

but I assume that would take me off protocol. I have prescription drug

coverage, so free drug is not really an issue at this time.

So I am concerned about how I should handle this...What would you guys do?

[Guest guest]

> Hi ,

>

> Going from .04 to .30 is almost a 1 log increase in the PCR value.

Nothing

> to be concerned about, but worth watching. I assume that the test

was done

> in the same lab and under the same conditions.

>

> The COH value 8.3 x 10-5 is 0.000083. This is 1000 times better

than the

> MDA result. So clearly there is something amiss and he just wants to

make

> sure by doing a BMB. This is a good idea if indeed something is

happening in

> the marrow.

>

> My attitude is very simple. First I want to find a lab that does very

> sensitive and consistent PCR testing. You want to be able to compare

apples

> with apples.

>

> If you are at 3 log reduction when it comes to your PCR test (i.e at

.. 0.01

> or better) then I would not increase the dose of Gleevec to try and

improve

> the result. There is no evidence that you will do better in the long

term if

> you are less than a 3 log reduction.

>

> My best example to justify this is Giora's experiment with Dr. Hochhaus.

> Giora was in the deepest remission of anyone and the moment he went off

> Gleevec, the Phillies started to come back. So what is the point of

enduring

> the increased side effects just to get to PCRU. There doesn't seem

to be an

> advantage .

>

> On a personal note, I am still trying to get 2 consistent PCR tests

back to

> back so I can reliably measure any difference. I have tried, but

have not

> been successful.

>

> In your shoes, I would insist on a PCR test monthly in order to

track the

> changes in your PCR level before asking to increase the dose.

>

> I hope this helps,.

>

> Zavie

______________________

Thanks Zavie,

I guess that I also don't understand why anyone would want to repeat a

BMA less than a month after it was performed in a different lab using

a different housekeeping gene. MDACC no longer performs marrow PCRs

only PB, so what could he be looking for? I was CCR at MDACC in the

report I sent COH last week. He tells me that he just wants to do a

marrow PCR which makes me wonder.

I've had 19 of these little procedures in the last four years...I'm

not afraid of them, but I don't want to have any I don't need.

I understand your point about dosage, but the thought of my CML

becoming more active just makes me want to jump out of my skin!

[Guest guest]

>

>Thanks Zavie,

>

>I guess that I also don't understand why anyone would want to repeat a

>BMA less than a month after it was performed in a different lab using

>a different housekeeping gene. MDACC no longer performs marrow PCRs

>only PB, so what could he be looking for? I was CCR at MDACC in the

>report I sent COH last week. He tells me that he just wants to do a

>marrow PCR which makes me wonder.

Hi ,

Dr. Druker also only performs PCR on peripheral blood now.....even when

also doing a bma/bmb because he thinks it is more accurate (I think because

they have a greater volume of blood to work with).

In 6 months you did have close to a 10 fold increase, and 3 x can be

significant.....I would wait and see what happens with the next

test....maybe not more than 3 months away. Maybe this was a fluke.

I don't know if you are going to MDACC every 3 months??? that could be a

problem. You simply can't compare the test results from the different

facilities.

As for COH, I would tell the doctor that you want to know specifically why

he is making the recommendations that he is......he should have a reason

for it and he should be willing to share that

info with you.

When MDACC first started mutation testing they would not tell patients the

results....I know this from an MDACC patient who then went to UCLA for the

testing. I would probably wait until the next PCR result, then if it is

also increased, get the mutation testing, but at someplace with experience,

like UCLA. I know that now they can tell with most of the known mutations,

just how much of each drug it will take to deal with it...........IM and

the new drugs.

Set you plan of action....about additional testing, which can only happen

over time......then stay in your skin and enjoy your family : ) and deal

with any change when you have the information.

One of my favorites quotes:

Worrying about something that MAY happen in the future is like paying

interest on money that you may never borrow.....or something like that.

Maui Nanc

>I've had 19 of these little procedures in the last four years...I'm

>not afraid of them, but I don't want to have any I don't need.

>

>I understand your point about dosage, but the thought of my CML

>becoming more active just makes me want to jump out of my skin!

>

>

[Guest guest]

Hello ,

Sorry for your concerns and worries. My only perspective at the

moment is that this is the difficulty we all face when we have two

different PCR's from two different places, with different variables,

such as houskeeping gene, different tech's and different

sensitivities. It gets pretty frustrating to say the least. I can

understand why Dr. T. would think about this as being a fluctuation

in the values. Mutation testing is done on PB and not necessarily on

the BMA. At ASH there were several studies showing that, when it

came to PCR, PB and BMA pretty much showed the same result. As for

your question about mutation testing, a larger majority respond to

higher doses of IM, but the increase seems so slight in your case,

that I don't think you have to increase your dose at the moment. I

think if the jump would have been higher, then if it were me I would

consider a dose increase.

I think I'd wait this out and go for another PCR at MDACC in a month

and maybe do that for a few months if necessary. It might yield

better data from which to make a decision; if there is one to make;>)!

Warm healing thoughts to you,

Cheers,

Cheryl-Anne

--- In , " Lieberman " <kisocean@e...>

wrote:

> I hope you guys can help me out with this one. I had a PB-PCR

> performed at MDACC which increased in six months from .04 to .3. The

> PB-PCR was repeated at COH last week and the result was 8.3 x 10-5.

> (By the way, I have no idea what that equation means...Is that more

or

> less than .3? Not that they can be compared realistically...) Dr.

> Talpaz seems content to treat this as a possible fluctuation in

> values. My doctor at COH (where I am followed locally)wants to

repeat

> my bone marrow and do a marrow PCR. Why would he want to do this?

For

> mutations testing? He only recently told me that they do perform

some

> mutations tests at COH but do not release the data to patients, nor

do

> they base any clinical treatment on the results of the tests.

>

> I am on protocol since 4-01 at MDACC with 400 mg Gleevec. I have

> prescription drug coverage and I would just as soon increase to

600mg,

> but I assume that would take me off protocol. I have prescription

drug

> coverage, so free drug is not really an issue at this time.

>

> So I am concerned about how I should handle this...What would you

guys do?

>

>

>

[Guest guest]

Hey ,

A quick tutorial: 8.3 x 10-5 is scientific notation. 10-5 should be read as

" ten to the minus fifth. " The " -5 " part should be a superscript above the

10, but email programs don't seem to do superscripts. To avoid this

confusion, it's also written as 10E-5 (E is for exponent), or 10^-5 (^ is

for superscript). Any way you write it, 10-5 is equivalent to .00001 (the

-5 means you count five places left from the decimal point, putting in zeros

along the way). And 8.3 times .00001 = .000083.

The bottom line, then, is that this COULDN'T BE A BETTER RESULT; it's

essentially equivalent to zero.

My guess is that they want to do a bone marrow PCR because your results have

fluctuated they think they may get a more reliable result from the marrow -

though whether or not this is true remains controversial. I doubt they want

to do mutation testing; 8.3 x 10-5 is probably too low to be able to detect

mutations even if they were there - which I doubt they are!

So it's almost party-time, - the only hitch being that your results

HAVE varied, and it's important to find out which is the correct number.

Love,

> Date: Fri, 06 May 2005 00:17:32 -0000

> From: " Lieberman " <kisocean@...>

> Subject: Still Freaking Out a Little/question re PCRs/ and others

>

> I hope you guys can help me out with this one. I had a PB-PCR

> performed at MDACC which increased in six months from .04 to .3. The

> PB-PCR was repeated at COH last week and the result was 8.3 x 10-5.

> (By the way, I have no idea what that equation means...Is that more or

> less than .3? Not that they can be compared realistically...) Dr.

> Talpaz seems content to treat this as a possible fluctuation in

> values. My doctor at COH (where I am followed locally)wants to repeat

> my bone marrow and do a marrow PCR. Why would he want to do this? For

> mutations testing? He only recently told me that they do perform some

> mutations tests at COH but do not release the data to patients, nor do

> they base any clinical treatment on the results of the tests.

>

> I am on protocol since 4-01 at MDACC with 400 mg Gleevec. I have

> prescription drug coverage and I would just as soon increase to 600mg,

> but I assume that would take me off protocol. I have prescription drug

> coverage, so free drug is not really an issue at this time.

>

> So I am concerned about how I should handle this...What would you guys do?

>

>

>