Re: BusinessWeek article about Dr. Druker

[Guest guest]

Thank you Tracey for sending the link to this article, and the other articles,

too.

I took a copy of Dr. Druker's slides from the last LLS teleconference (and a

whole stack of journal articles) with me to my visit to the hemonc 10 days ago.

I had warned them I wanted a discussion about the decision to increase my

Gleevec dose from 400mg to 600mg. Had a really good talk. The dosage increase

was right out of the NCCN guidelines for 6 months from diagnosis. Since I was

not quite at CCR (even with a 3 log decrease in the PCR from .8100 (81%)

BCR-ABL/ABL at diagnosis to .00081 (0.81%)), there is an " either/or " in the NCCN

guidelines: Either continue with the 400mg Gleevec or " increase ... to a maximum

of 800 mg, as tolerated " . And I thought I was making really good progress.

Well, with my litany of complaints, they agreed that I did not tolerate the

increased dose well. It probably helped that my left eye was nearly swollen shut

from the puffiness, and I was having a magnificent eyebleed in the right eye

while I was in the office. It was my decision to go back to the 400mg dose,

which I can handle with the sometimes-annoying but tolerable side effects.

I don't have the latest test results yet, and should hear sometime this week. If

any of the numbers are not going in the right direction from this test or at the

12 month BMB, then they'll want to switch me to Sprycel.

Right now I feel better than I have since September. It's only taken me a month

to correct the research mistakes I made in the brain fog in October! I won't

quite make my goal of defending for my PhD before my 60th birthday, but I am

close now.

Thanks all for the chuckles about the pregnancy testing. Wow, but that would be

something!

Martha

dx April 2008

3 log reduction September 2008

Zavie's Zero #1237

[Guest guest]

Hi Martha,

I find it odd that you have a 3 log reduction but yet aren't in CCR?

By most labs, a 2 log reduction would be around the same value as

CCR.

Usually when they do the log reduction calculation, they use the

lab's baseline rather than your own personal result from diagnosis.

This is because so many of us never got a baseline value (as we were

diagnosed before PCR's were used).

Do you know what the lab's baseline factor is? This is an average

they use having tested a number of newly diagnosed patients.

When earlier guidelines suggested that a 3 log reduction be used as a

goal of treatment, the factors were all done using lab baselines

rather than personal results. Now some doctors have revised the goal

and suggest that maintaining a solid CCR is good enough and a 3 log

reduction isn't necessary for long term protection. By all accounts,

a 3 log reduction is considered superior to CCR though.

Tracey

>

> Thank you Tracey for sending the link to this article, and the

other articles, too.

>

> I took a copy of Dr. Druker's slides from the last LLS

teleconference (and a whole stack of journal articles) with me to my

visit to the hemonc 10 days ago. I had warned them I wanted a

discussion about the decision to increase my Gleevec dose from 400mg

to 600mg. Had a really good talk. The dosage increase was right out

of the NCCN guidelines for 6 months from diagnosis. Since I was not

quite at CCR (even with a 3 log decrease in the PCR from .8100 (81%)

BCR-ABL/ABL at diagnosis to .00081 (0.81%)), there is an " either/or "

in the NCCN guidelines: Either continue with the 400mg Gleevec

or " increase ... to a maximum of 800 mg, as tolerated " . And I thought

I was making really good progress.

>

> Well, with my litany of complaints, they agreed that I did not

tolerate the increased dose well. It probably helped that my left eye

was nearly swollen shut from the puffiness, and I was having a

magnificent eyebleed in the right eye while I was in the office. It

was my decision to go back to the 400mg dose, which I can handle with

the sometimes-annoying but tolerable side effects.

>

> I don't have the latest test results yet, and should hear sometime

this week. If any of the numbers are not going in the right direction

from this test or at the 12 month BMB, then they'll want to switch me

to Sprycel.

>

> Right now I feel better than I have since September. It's only

taken me a month to correct the research mistakes I made in the brain

fog in October! I won't quite make my goal of defending for my PhD

before my 60th birthday, but I am close now.

>

> Thanks all for the chuckles about the pregnancy testing. Wow, but

that would be something!

>

> Martha

> dx April 2008

> 3 log reduction September 2008

> Zavie's Zero #1237

>