Re: Major Molecular Response - Marcos

[Guest guest]

Marcos,

Thank you for your reply. It will be wonderful when the PCRs are

standardized.

The OHSU PCR report is 2 pages long! It is vastly general information

describing and interpreting the PCR test, not info specific to me. But

it does state my log reduction of 1.7.

If there something specific you would like me to search for in the

description or interpretation paragraphs on the PCR result, please let

me know.

Again, thank you for your reply.

JoAnn

> > > >

> > > > Hi Mark and Marcos,

> > > >

> > > > Anytime a number is that low it's a good thing but I'm not

sure how

> > > > significant it is if the PCR's sensitivity was only 1 in 1,000.

> > > >

> > > > By definition, the famous 3 log reduction that we're all

aiming for

> > > > (which is how they define a major molecular response) , is a

> > > > reduction in transcripts by 1000 fold. Now if someone is still

> > > > positive on a test that only has a sensitivity of 1,000, would

that

> > > > not mean that their reduction is less than a 1000?

> > > >

> > > > As I've stated in previous posts, math is hardly my strong

suit but I

> > > > do know that the experts have said that PCR's with

sensitivities of

> > > > less than 1 in 100,000 are unreliable and give little information.

> > > >

> > > > Mark, I would suggest that you ask if you can send your samples to

> > > > another lab where they do more sensitive testing and this way

you'll

> > > > know exactly where you stand.

> > > >

> > > > Tracey

> >

> >

> >

>

>

>

> --

> Marcos Perreau Guimaraes

> Suppes Brain Lab

> Ventura Hall - CSLI

> Stanford University

> 220 Panama street

> Stanford CA 94305-4101

> 650 614 2305

> 650 630 5015 (cell)

> marcospg@...

> montereyunderwater@...

> www.stanford.edu/~marcospg/

>

>

>

[Guest guest]

Sounds like the baseline for the OHSU report is around 4. I have also

a 2 pages report from Stanford that's mostly general information. In

case you are curious, the last one gives (in short) :

- The minor (p190) and major (p210) breakpoints corresponding to the

exact type of t(9:22) translocation. Our bug is p210.

- The number of copies of p210 : 60 something, I can't remember exactly.

- the normalized ratio between the number of copies of p210 by the

number of copies of the gene of reference (house keeping gene). How

exactly they get this " normalized " ratio I don't know, but I guess it

varies from lab to lab. : 0.0023

- the baseline ratio, an average of this ratio at dx from Stanford

hospital data : 1.04

- the log reduction : - 2.66 ( = log(0.0023/1.04), base 10 logarithm )

Marcos.

On 8/2/07, basuinokelly2002 <basuinokelly@...> wrote:

>

>

>

>

>

>

> Marcos,

> Thank you for your reply. It will be wonderful when the PCRs are

> standardized.

>

> The OHSU PCR report is 2 pages long! It is vastly general information

> describing and interpreting the PCR test, not info specific to me. But

> it does state my log reduction of 1.7.

>

> If there something specific you would like me to search for in the

> description or interpretation paragraphs on the PCR result, please let

> me know.

>

> Again, thank you for your reply.

>

> JoAnn

>

> > > > >

> > > > > Hi Mark and Marcos,

> > > > >

> > > > > Anytime a number is that low it's a good thing but I'm not

> sure how

> > > > > significant it is if the PCR's sensitivity was only 1 in 1,000.

> > > > >

> > > > > By definition, the famous 3 log reduction that we're all

> aiming for

> > > > > (which is how they define a major molecular response) , is a

> > > > > reduction in transcripts by 1000 fold. Now if someone is still

> > > > > positive on a test that only has a sensitivity of 1,000, would

> that

> > > > > not mean that their reduction is less than a 1000?

> > > > >

> > > > > As I've stated in previous posts, math is hardly my strong

> suit but I

> > > > > do know that the experts have said that PCR's with

> sensitivities of

> > > > > less than 1 in 100,000 are unreliable and give little information.

> > > > >

> > > > > Mark, I would suggest that you ask if you can send your samples to

> > > > > another lab where they do more sensitive testing and this way

> you'll

> > > > > know exactly where you stand.

> > > > >

> > > > > Tracey

> > >

> > >

> > >

> >

> >

> >

> > --

> > Marcos Perreau Guimaraes

> > Suppes Brain Lab

> > Ventura Hall - CSLI

> > Stanford University

> > 220 Panama street

> > Stanford CA 94305-4101

> > 650 614 2305

> > 650 630 5015 (cell)

> > marcospg@...

> > montereyunderwater@...

> > www.stanford.edu/~marcospg/

> >

> >

> >

[Guest guest]

Marcos,

Thank you for this additional information. Your Stanford PCR report

gives more information than my OHSU PCR report. There is no mention

of number of copies or normalized ratio. Only Bcr-abl/g6PDH RNA ratio:

.079 and Bcr-abl log drop from baseline: 1.7

I have been told that a 3 log reduction at OHSU is .005%.

Waiting patiently for standardized PCRs!!

JoAnn

>

> Sounds like the baseline for the OHSU report is around 4. I have also

> a 2 pages report from Stanford that's mostly general information. In

> case you are curious, the last one gives (in short) :

> - The minor (p190) and major (p210) breakpoints corresponding to the

> exact type of t(9:22) translocation. Our bug is p210.

> - The number of copies of p210 : 60 something, I can't remember exactly.

> - the normalized ratio between the number of copies of p210 by the

> number of copies of the gene of reference (house keeping gene). How

> exactly they get this " normalized " ratio I don't know, but I guess it

> varies from lab to lab. : 0.0023

> - the baseline ratio, an average of this ratio at dx from Stanford

> hospital data : 1.04

> - the log reduction : - 2.66 ( = log(0.0023/1.04), base 10 logarithm )

>

> Marcos.

>

>

[Guest guest]

Marcos:

When we get the results of 's next PCR--can we just send them to you and

can decipher??!!! Thanks so much for your knowledge on this subject.

just switched about a month ago from Gleevec to Sprycel, as he developed a

liver intolerance to Gleevec. So far, so good on Sprycel. We have a very

good onc that we respect very much, so we are lucky. And now that we have

seen Dr. Druker and have access to him, we feel we are very well taken care

of. However, Dr. Druker only had 2 comments in regards to how 's onc has

handled his CML thus far:

1. was on Gleevec for about 8 months before he developed the liver

intolerance. His onc followed the " protocol " of taking him off Gleevec until

his liver returned to normal. Then, she resumed Gleevec at a lower doseage

and kept close eyes on his liver counts - she checked them again after 5

days. In just those 5 days his counts shot back up. At that point, she

decided to switch to Sprycel, which is what we did. It was fairly obvious

that the Gleevec was what was causing 's liver toxicity. Well, Dr.

Druker said he would have tried introducing steroids to see if that could

combat the liver issues, before taking off Gleevec altogether so

quickly. He did point out that although Sprycel is showing very promising

results (and he did say it may become the front-line treatment in the very

near future), bottom-line, it is a new drug. He still does prescribe Gleevec

as the front-line treatment, and would like people to get as many years out

of Gleevec as possible, before switching to Sprycel. Basically, he just said

he would have tried a couple other " avenues " before taking off Gleevec.

However, with that said, maybe Sprycel is the drug that will respond

best to. And Dr. Druker did also say that it's not like if you stop Gleevec,

you can never go back. But, we are hoping Sprycel is 's answer.

2. The second issue we discussed for a while is the fact that was on

Gleevec long enough to have had a BMB done to see really how well he was

responding to it. However, at the point he was taken off Gleevec, his onc

did NOT do a BMB, and the last time had one done was last October, not

very long after having been diagnosed (he did, of course have a BMB at

diagnosis last July). Dr. Druker was a little " bummed " (OK, he didnt use

that word, that is my word!), but he pointed out that since we dont have a

recent BMB, he really doesnt know just how well was responding to

Gleevec (If you respond well to Gleevec, in terms of cytogenics, then

chances are you will respond well to Sprycel). That news bummed my husband

out, started feeling like we " wasted " the last 8 months. OK, he knows

we didnt waste it, but he wont get another BMB for another 5 months, at

which point then we can see really how well he is responding to Sprycel. So,

for , he started feeling like he still has to live " in limbo " for the

next 5 months, he wont know if it is " working " on him till then.

We still plan on putting together an email with a brief rundown of our appt

with Dr. Druker...most of what we talked about alot of people on this forum

already know, but we wanted to put together a synopsis in the next couple

days. #1 THING: if you DO go see Dr. Druker--bring a tape recorder!!! We

didnt, and we regret it! Zavie even told us to bring one, and we still

didnt. However, Dr. Druker did draw tons of charts and take tons of notes as

he was talking to us, and gave us those, and I, too, was taking tons of

notes while and Dr. Druker talked.

Take care,

Cervera

wife of Cervera - age 34

Dx 7/2006, was on 400mg/Gleevec daily

Switched to Sprycel (due to Gleevec liver intolerance) 6/29/07..140mg/daily

>From: " Marcos Perreau Guimaraes " <montereyunderwater@...>

>Reply-

>

>Subject: Re: [ ] Major Molecular Response - Marcos

>Date: Thu, 2 Aug 2007 12:24:00 -0700

>

>Sounds like the baseline for the OHSU report is around 4. I have also

>a 2 pages report from Stanford that's mostly general information. In

>case you are curious, the last one gives (in short) :

>- The minor (p190) and major (p210) breakpoints corresponding to the

>exact type of t(9:22) translocation. Our bug is p210.

>- The number of copies of p210 : 60 something, I can't remember exactly.

>- the normalized ratio between the number of copies of p210 by the

>number of copies of the gene of reference (house keeping gene). How

>exactly they get this " normalized " ratio I don't know, but I guess it

>varies from lab to lab. : 0.0023

>- the baseline ratio, an average of this ratio at dx from Stanford

>hospital data : 1.04

>- the log reduction : - 2.66 ( = log(0.0023/1.04), base 10 logarithm )

>

>Marcos.

>

>On 8/2/07, basuinokelly2002 <basuinokelly@...> wrote:

> >

> >

> >

> >

> >

> >

> > Marcos,

> > Thank you for your reply. It will be wonderful when the PCRs are

> > standardized.

> >

> > The OHSU PCR report is 2 pages long! It is vastly general information

> > describing and interpreting the PCR test, not info specific to me. But

> > it does state my log reduction of 1.7.

> >

> > If there something specific you would like me to search for in the

> > description or interpretation paragraphs on the PCR result, please let

> > me know.

> >

> > Again, thank you for your reply.

> >

> > JoAnn

> >

> > > > > >

> > > > > > Hi Mark and Marcos,

> > > > > >

> > > > > > Anytime a number is that low it's a good thing but I'm not

> > sure how

> > > > > > significant it is if the PCR's sensitivity was only 1 in 1,000.

> > > > > >

> > > > > > By definition, the famous 3 log reduction that we're all

> > aiming for

> > > > > > (which is how they define a major molecular response) , is a

> > > > > > reduction in transcripts by 1000 fold. Now if someone is still

> > > > > > positive on a test that only has a sensitivity of 1,000, would

> > that

> > > > > > not mean that their reduction is less than a 1000?

> > > > > >

> > > > > > As I've stated in previous posts, math is hardly my strong

> > suit but I

> > > > > > do know that the experts have said that PCR's with

> > sensitivities of

> > > > > > less than 1 in 100,000 are unreliable and give little

>information.

> > > > > >

> > > > > > Mark, I would suggest that you ask if you can send your samples

>to

> > > > > > another lab where they do more sensitive testing and this way

> > you'll

> > > > > > know exactly where you stand.

> > > > > >

> > > > > > Tracey

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > Marcos Perreau Guimaraes

> > > Suppes Brain Lab

> > > Ventura Hall - CSLI

> > > Stanford University

> > > 220 Panama street

> > > Stanford CA 94305-4101

> > > 650 614 2305

> > > 650 630 5015 (cell)

> > > marcospg@...

> > > montereyunderwater@...

> > > www.stanford.edu/~marcospg/

> > >

> > >

> > >

[Guest guest]

log10(0.005/4) = -2.9

That makes sense for a baseline around 4. But the most relevant info on

these reports is the log reduction, the rest I think is not so useful to

monitor the residual disease. I am just a nosy person by trade and as a

general rule like to know how a number as been obtained.

Marcos.

On 8/2/07, basuinokelly2002 <basuinokelly@...> wrote:

>

> Marcos,

> Thank you for this additional information. Your Stanford PCR report

> gives more information than my OHSU PCR report. There is no mention

> of number of copies or normalized ratio. Only Bcr-abl/g6PDH RNA ratio:

> .079 and Bcr-abl log drop from baseline: 1.7

>

> I have been told that a 3 log reduction at OHSU is .005%.

>

> Waiting patiently for standardized PCRs!!

>

> JoAnn

>

>

> >

> > Sounds like the baseline for the OHSU report is around 4. I have also

> > a 2 pages report from Stanford that's mostly general information. In

> > case you are curious, the last one gives (in short) :

> > - The minor (p190) and major (p210) breakpoints corresponding to the

> > exact type of t(9:22) translocation. Our bug is p210.

> > - The number of copies of p210 : 60 something, I can't remember exactly.

> > - the normalized ratio between the number of copies of p210 by the

> > number of copies of the gene of reference (house keeping gene). How

> > exactly they get this " normalized " ratio I don't know, but I guess it

> > varies from lab to lab. : 0.0023

> > - the baseline ratio, an average of this ratio at dx from Stanford

> > hospital data : 1.04

> > - the log reduction : - 2.66 ( = log(0.0023/1.04), base 10 logarithm )

> >

> > Marcos.

> >

> >

>

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

On 8/2/07, Cervera <weez_555@...> wrote:

> Marcos:

> When we get the results of 's next PCR--can we just send them to you and

> can decipher??!!! Thanks so much for your knowledge on this subject.

Sure, but keep in mind my phd is in computer science. And there are

others in the list that know at least as much as I do and had a longer

cml journey.

Concerning not having a BMB done just before switching drugs, I

wouldn't be too concerned by that as a patient. The cml cells that got

killed by gleevec won't ressucitate because he has switched drugs, and

quality of life is important, if gleevec makes him sick and sprycel

does the job that's good. I understand the research doctor would want

the information, but I would think it has more to do with helping

gathering research information (which indirectly helps and

everyone here). One of the reasons we should educate ourselves about

cml is that there isn't a consensus among doctors (even top drs) on

the treatement strategy, and some regular drs know quite little.

Marcos.

> just switched about a month ago from Gleevec to Sprycel, as he developed a

> liver intolerance to Gleevec. So far, so good on Sprycel. We have a very

> good onc that we respect very much, so we are lucky. And now that we have

> seen Dr. Druker and have access to him, we feel we are very well taken care

> of. However, Dr. Druker only had 2 comments in regards to how 's onc has

> handled his CML thus far:

>

> 1. was on Gleevec for about 8 months before he developed the liver

> intolerance. His onc followed the " protocol " of taking him off Gleevec until

> his liver returned to normal. Then, she resumed Gleevec at a lower doseage

> and kept close eyes on his liver counts - she checked them again after 5

> days. In just those 5 days his counts shot back up. At that point, she

> decided to switch to Sprycel, which is what we did. It was fairly obvious

> that the Gleevec was what was causing 's liver toxicity. Well, Dr.

> Druker said he would have tried introducing steroids to see if that could

> combat the liver issues, before taking off Gleevec altogether so

> quickly. He did point out that although Sprycel is showing very promising

> results (and he did say it may become the front-line treatment in the very

> near future), bottom-line, it is a new drug. He still does prescribe Gleevec

> as the front-line treatment, and would like people to get as many years out

> of Gleevec as possible, before switching to Sprycel. Basically, he just said

> he would have tried a couple other " avenues " before taking off Gleevec.

> However, with that said, maybe Sprycel is the drug that will respond

> best to. And Dr. Druker did also say that it's not like if you stop Gleevec,

> you can never go back. But, we are hoping Sprycel is 's answer.

>

> 2. The second issue we discussed for a while is the fact that was on

> Gleevec long enough to have had a BMB done to see really how well he was

> responding to it. However, at the point he was taken off Gleevec, his onc

> did NOT do a BMB, and the last time had one done was last October, not

> very long after having been diagnosed (he did, of course have a BMB at

> diagnosis last July). Dr. Druker was a little " bummed " (OK, he didnt use

> that word, that is my word!), but he pointed out that since we dont have a

> recent BMB, he really doesnt know just how well was responding to

> Gleevec (If you respond well to Gleevec, in terms of cytogenics, then

> chances are you will respond well to Sprycel). That news bummed my husband

> out, started feeling like we " wasted " the last 8 months. OK, he knows

> we didnt waste it, but he wont get another BMB for another 5 months, at

> which point then we can see really how well he is responding to Sprycel. So,

> for , he started feeling like he still has to live " in limbo " for the

> next 5 months, he wont know if it is " working " on him till then.

>

> We still plan on putting together an email with a brief rundown of our appt

> with Dr. Druker...most of what we talked about alot of people on this forum

> already know, but we wanted to put together a synopsis in the next couple

> days. #1 THING: if you DO go see Dr. Druker--bring a tape recorder!!! We

> didnt, and we regret it! Zavie even told us to bring one, and we still

> didnt. However, Dr. Druker did draw tons of charts and take tons of notes as

> he was talking to us, and gave us those, and I, too, was taking tons of

> notes while and Dr. Druker talked.

>

> Take care,

> Cervera

> wife of Cervera - age 34

> Dx 7/2006, was on 400mg/Gleevec daily

> Switched to Sprycel (due to Gleevec liver intolerance) 6/29/07..140mg/daily

>

> >From: " Marcos Perreau Guimaraes " <montereyunderwater@...>

> >Reply-

> >

> >Subject: Re: [ ] Major Molecular Response - Marcos

> >Date: Thu, 2 Aug 2007 12:24:00 -0700

>

> >

> >Sounds like the baseline for the OHSU report is around 4. I have also

> >a 2 pages report from Stanford that's mostly general information. In

> >case you are curious, the last one gives (in short) :

> >- The minor (p190) and major (p210) breakpoints corresponding to the

> >exact type of t(9:22) translocation. Our bug is p210.

> >- The number of copies of p210 : 60 something, I can't remember exactly.

> >- the normalized ratio between the number of copies of p210 by the

> >number of copies of the gene of reference (house keeping gene). How

> >exactly they get this " normalized " ratio I don't know, but I guess it

> >varies from lab to lab. : 0.0023

> >- the baseline ratio, an average of this ratio at dx from Stanford

> >hospital data : 1.04

> >- the log reduction : - 2.66 ( = log(0.0023/1.04), base 10 logarithm )

> >

> >Marcos.

> >

> >On 8/2/07, basuinokelly2002 <basuinokelly@...> wrote:

> > >

> > >

> > >

> > >

> > >

> > >

> > > Marcos,

> > > Thank you for your reply. It will be wonderful when the PCRs are

> > > standardized.

> > >

> > > The OHSU PCR report is 2 pages long! It is vastly general information

> > > describing and interpreting the PCR test, not info specific to me. But

> > > it does state my log reduction of 1.7.

> > >

> > > If there something specific you would like me to search for in the

> > > description or interpretation paragraphs on the PCR result, please let

> > > me know.

> > >

> > > Again, thank you for your reply.

> > >

> > > JoAnn

> > >

> > > > > > >

> > > > > > > Hi Mark and Marcos,

> > > > > > >

> > > > > > > Anytime a number is that low it's a good thing but I'm not

> > > sure how

> > > > > > > significant it is if the PCR's sensitivity was only 1 in 1,000.

> > > > > > >

> > > > > > > By definition, the famous 3 log reduction that we're all

> > > aiming for

> > > > > > > (which is how they define a major molecular response) , is a

> > > > > > > reduction in transcripts by 1000 fold. Now if someone is still

> > > > > > > positive on a test that only has a sensitivity of 1,000, would

> > > that

> > > > > > > not mean that their reduction is less than a 1000?

> > > > > > >

> > > > > > > As I've stated in previous posts, math is hardly my strong

> > > suit but I

> > > > > > > do know that the experts have said that PCR's with

> > > sensitivities of

> > > > > > > less than 1 in 100,000 are unreliable and give little

> >information.

> > > > > > >

> > > > > > > Mark, I would suggest that you ask if you can send your samples

> >to

> > > > > > > another lab where they do more sensitive testing and this way

> > > you'll

> > > > > > > know exactly where you stand.

> > > > > > >

> > > > > > > Tracey

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

> > > > --

> > > > Marcos Perreau Guimaraes

> > > > Suppes Brain Lab

> > > > Ventura Hall - CSLI

> > > > Stanford University

> > > > 220 Panama street

> > > > Stanford CA 94305-4101

> > > > 650 614 2305

> > > > 650 630 5015 (cell)

> > > > marcospg@...

> > > > montereyunderwater@...

> > > > www.stanford.edu/~marcospg/

> > > >

> > > >

> > > >

[Guest guest]

Marcos wrote:

Concerning not having a BMB done just before switching drugs, I

wouldn't be too concerned by that as a patient. The cml cells that got

killed by gleevec won't ressucitate because he has switched drugs, and

quality of life is important, if gleevec makes him sick and sprycel

does the job that's good. I understand the research doctor would want

the information, but I would think it has more to do with helping

gathering research information (which indirectly helps and

everyone here).

___________

Hi Marcos and ,

Marcos, I do not think your interpretation of why Dr. D would have

preferred a BMB before switched drugs is correct. This would exactly

give him information regarding 's treatment...and not mostly for

research. He wanted to know what kind of response got from Gleevec,

despite the liver problem which did not occur for 8 months (I think

wrote).....now when they see results from the next BMB they will not know

whether if was mostly from the new drug Sprycel....or what part was from

Gleevec. Sprycel is supposed to be about 300x more potent for these ph+

cells. IF was actually getting a good cyto response from Gleevec (and

knew this from a BMB) and had any future problem with Sprycel, Dr. D would

know that he could go back on Gleevec and maybe deal with the liver

problem. If Gleevec was not working so well for him, he might consider

something else???? ( and ....I am not writing any of this to cause

you more worry/concern....this is not likely to happen. And none of us

should spend time fretting over stuff not done, etc......we get smarter and

we do better....Maya Angelou. I am glad to hear that you had such a

worthwhile consult with Dr. Druker. I actually did the same with Dr. Talpaz

years ago. I was a Druker patient and waiting for a 'new' drug and went to

MDACC for a consult with Dr. Talpaz, who agreed with Dr. D's thinking about

my case. It was a small price to pay for 'peace of mind').

Marcos....I have been Dr. D's patient for 7.5 years and he ALWAYS likes to

have the full picture when he can...he actually does both a bmb and a bma

on his patients, just to have all the info he can in his hands. In the

clinic he is 100% patient oriented and he tailors his treatment to that

patient. The advantage to seeing him is that he has all his first hand

research information to draw on....which most other oncologists are just

reading about.

C.

[Guest guest]

Hi ,

I wasn't criticizing Dr Drucker at all. There is nothing wrong about

being strict on protocols and collecting data for research, I wish

more drs were that way. If has a good remission without having to

take steroids (which have side effects) I don't think he should feel

bummed about the missed bmb, that's all. He should go out with ,

enjoy summer, have a b ... lemonade (sorry ), and forget about cml

for some time. Reminds me I am nearing my 2h/week having cml, you all

have a great week-end.

Cheers,

Marcos.

On 8/3/07, Cogan <ncogan@...> wrote:

> >

> Marcos wrote:

> Concerning not having a BMB done just before switching drugs, I

> wouldn't be too concerned by that as a patient. The cml cells that got

> killed by gleevec won't ressucitate because he has switched drugs, and

> quality of life is important, if gleevec makes him sick and sprycel

> does the job that's good. I understand the research doctor would want

> the information, but I would think it has more to do with helping

> gathering research information (which indirectly helps and

> everyone here).

> ___________

>

> Hi Marcos and ,

>

> Marcos, I do not think your interpretation of why Dr. D would have

> preferred a BMB before switched drugs is correct. This would exactly

> give him information regarding 's treatment...and not mostly for

> research. He wanted to know what kind of response got from Gleevec,

> despite the liver problem which did not occur for 8 months (I think

> wrote).....now when they see results from the next BMB they will not know

> whether if was mostly from the new drug Sprycel....or what part was from

> Gleevec. Sprycel is supposed to be about 300x more potent for these ph+

> cells. IF was actually getting a good cyto response from Gleevec (and

> knew this from a BMB) and had any future problem with Sprycel, Dr. D would

> know that he could go back on Gleevec and maybe deal with the liver

> problem. If Gleevec was not working so well for him, he might consider

> something else???? ( and ....I am not writing any of this to cause

> you more worry/concern....this is not likely to happen. And none of us

> should spend time fretting over stuff not done, etc......we get smarter and

> we do better....Maya Angelou. I am glad to hear that you had such a

> worthwhile consult with Dr. Druker. I actually did the same with Dr. Talpaz

> years ago. I was a Druker patient and waiting for a 'new' drug and went to

> MDACC for a consult with Dr. Talpaz, who agreed with Dr. D's thinking about

> my case. It was a small price to pay for 'peace of mind').

>

> Marcos....I have been Dr. D's patient for 7.5 years and he ALWAYS likes to

> have the full picture when he can...he actually does both a bmb and a bma

> on his patients, just to have all the info he can in his hands. In the

> clinic he is 100% patient oriented and he tailors his treatment to that

> patient. The advantage to seeing him is that he has all his first hand

> research information to draw on....which most other oncologists are just

> reading about.

>

> C.

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

This is sorta funny, in response to your " have a b..., lemonade "

comment...we brought about 12 questions to Dr. Druker, by the time we got

around to asking them, he had actually already answered most of them. So, of

the few questions remaining on the list, asked by was: " Can I drink a

beer here and there? " Dr. Druker smiled and said " Yes, but dont overdo

it! " ..

So, cheers...

Cervera

>From: " Marcos Perreau Guimaraes " <montereyunderwater@...>

>Reply-

>

>Subject: Re: [ ] Re: Major Molecular Response - Marcos

>Date: Fri, 3 Aug 2007 14:02:26 -0700

>

>Hi ,

>I wasn't criticizing Dr Drucker at all. There is nothing wrong about

>being strict on protocols and collecting data for research, I wish

>more drs were that way. If has a good remission without having to

>take steroids (which have side effects) I don't think he should feel

>bummed about the missed bmb, that's all. He should go out with ,

>enjoy summer, have a b ... lemonade (sorry ), and forget about cml

>for some time. Reminds me I am nearing my 2h/week having cml, you all

>have a great week-end.

>Cheers,

>Marcos.

>

>On 8/3/07, Cogan <ncogan@...> wrote:

> > >

> > Marcos wrote:

> > Concerning not having a BMB done just before switching drugs, I

> > wouldn't be too concerned by that as a patient. The cml cells that got

> > killed by gleevec won't ressucitate because he has switched drugs, and

> > quality of life is important, if gleevec makes him sick and sprycel

> > does the job that's good. I understand the research doctor would want

> > the information, but I would think it has more to do with helping

> > gathering research information (which indirectly helps and

> > everyone here).

> > ___________

> >

> > Hi Marcos and ,

> >

> > Marcos, I do not think your interpretation of why Dr. D would have

> > preferred a BMB before switched drugs is correct. This would

>exactly

> > give him information regarding 's treatment...and not mostly for

> > research. He wanted to know what kind of response got from Gleevec,

> > despite the liver problem which did not occur for 8 months (I think

>

> > wrote).....now when they see results from the next BMB they will not

>know

> > whether if was mostly from the new drug Sprycel....or what part was from

> > Gleevec. Sprycel is supposed to be about 300x more potent for these ph+

> > cells. IF was actually getting a good cyto response from Gleevec

>(and

> > knew this from a BMB) and had any future problem with Sprycel, Dr. D

>would

> > know that he could go back on Gleevec and maybe deal with the liver

> > problem. If Gleevec was not working so well for him, he might consider

> > something else???? ( and ....I am not writing any of this to

>cause

> > you more worry/concern....this is not likely to happen. And none of us

> > should spend time fretting over stuff not done, etc......we get smarter

>and

> > we do better....Maya Angelou. I am glad to hear that you had such a

> > worthwhile consult with Dr. Druker. I actually did the same with Dr.

>Talpaz

> > years ago. I was a Druker patient and waiting for a 'new' drug and went

>to

> > MDACC for a consult with Dr. Talpaz, who agreed with Dr. D's thinking

>about

> > my case. It was a small price to pay for 'peace of mind').

> >

> > Marcos....I have been Dr. D's patient for 7.5 years and he ALWAYS likes

>to

> > have the full picture when he can...he actually does both a bmb and a

>bma

> > on his patients, just to have all the info he can in his hands. In the

> > clinic he is 100% patient oriented and he tailors his treatment to that

> > patient. The advantage to seeing him is that he has all his first hand

> > research information to draw on....which most other oncologists are just

> > reading about.

> >

> > C.

> >

> >

>

>

>

>--

>Marcos Perreau Guimaraes

>Suppes Brain Lab

>Ventura Hall - CSLI

>Stanford University

>220 Panama street

>Stanford CA 94305-4101

>650 614 2305

>650 630 5015 (cell)

>marcospg@...

>montereyunderwater@...

>www.stanford.edu/~marcospg/

_________________________________________________________________

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[Guest guest]

Hi ,

I wasn't criticizing Dr Drucker at all. There is nothing wrong about

being strict on protocols and collecting data for research, I wish

more drs were that way. If has a good remission without having to

take steroids (which have side effects) I don't think he should feel

bummed about the missed bmb, that's all.

___________________

Hi Marcos,

you missed my point....there was a reason Dr. D would have preferred a bmb

with at that point...it was not because of a protocol, it was for some

information! I have known a number of people who did have the liver

toxicity and took small doses of steroids for a relatively short period of

time and did get back on Gleevec. I know that your 2 hrs of cml/week are

up.....so you need not respond.

C.