Re: Tonight's teleconference (long)

December 14, 2006

Thank you very much Tracey. That was all very informative...and encouraging!

shalyn

" Catch on fire with enthusiasm and people will come for miles to watch you

burn. " - Wesley

December 14, 2006

Hi Tracey,

Was is you that got a question answered on the teleconference? They said

Tracey from Ontario and I assumed it was you. From what I can remember your

question had something to do with an issue that is a concern for me‹low

blood counts. My phone connection was kind of bad so I don¹t think I got all

of what Dr. Shah said. Something about if you have low cellularity and low

blood counts it could indicate that Gleevec might be taking out some of your

good cells? What else did you get out of his response to your question?

Thanks,

Cam

On 12/13/06 8:47 PM, " Tracey " <traceyincanada@...> wrote:

>

> Hi Everyone,

>

> I thought I'd post a bit about what was said in tonight's

> teleconference from Doctors Druker and Shah for those who didn't get

> a chance to listen to it.

>

> I can't guarantee that my numbers are 100% accurate but this is what

> I remember hearing from the five year follow up of the IRIS trial:

>

> 13% of patients relapsed or became resistant to Gleevec

> 8% of patients left the trial voluntarily for a variety of

> reasons...some left to pursue other options, some left because they

> were tired of all the follow up appointments/testing, some left

> because they didn't want the hassle of travelling to far away

> centres and some left for other reasons.

> 4% of patients stopped taking Gleevec due to intolerable side effects

> 3% left the study to seek a BMT

> 1% of patients were lost somewhere and couldn't be found (Where's

> Waldo

> 2% of patients died from causes that had nothing to do with CML (I

> guess they were hit by the proverbial bus)

>

> So that leaves 69% of patients of the original 553 who started the

> trial, still in the trial and 31% of the patients who are no longer

> in the trial.

>

> Roughly 75% of patients will do marvellously on 400mg of Gleevec and

> 25% will need something more than 400mg (either a higher dose or a

> different drug)

>

> 50% of the patients who left the trial, actually left while they

> were in CCR so we shouldn't assume that those who left, left because

> they weren't doing well.

>

> Only 7% of patients of this group of patients have progressed to

> more advanced stages (accelerated or blast) which means that 93%

> have NOT progressed in their disease for 5 years. Now keep in mind

> the difference between relapsing and progressing. Relapsing is when

> you lose your response but you're still in chronic phase, whereas

> progressing is when you pass the chronic phase and enter the more

> advanced phases.

>

> The risk of relapse for those who achieved CCR within 1 year is only

> 3% after 5 years with that figure dropping in the 4th and 5th year.

> The most relapses were seen in the second year of treatment.

>

> Dr. Druker addressed the CHF issue by saying that out of the 553

> patients in the IRIS trial, only 1 developed CHF (congestive heart

> failure) which he said is not significant enough to warrant baseline

> echos for everyone. He did suggest however that for those who have

> risk factors for heart disease (high blood pressure, diabetes,

> family history, etc) then they should get a base line echo for

> reference.

>

> It's quite amazing how far we've come in just a couple of years. We

> started out with Gleevec which was an amazing break through. Then

> we got the second generation kinase inhibitors (Sprycel and Tasigna)

> and now we even have a third generation drug that is showing promise

> in early clinical trials (MK0457).

>

> I know many of us are concerned with the long term effects of taking

> these drugs for the rest of lives but they said that so far, there

> hasn't been an issue of long term toxicities which I guess means

> that they haven't seen anyone grow a third eyeball yet.

>

> The issue of reducing dosages was addressed. They said that a year

> ago, they didn't recommend anyone lower their dose (even those on

> 800) but now that we have so many options and now that we see the

> relapse rates actually declining, they have allowed some people to

> reduce their dose from 800 to 600 or 600 to 400 but they don't

> recommend that anyone go below 400mg.

>

> They addressed relapse rates in BMT's which I found interesting.

> 10% of patients will relapse from a regular sibling matched BMT but

> 50% will relapse from an identical twin matched BMT.

>

> Trisomy 8 in PH negative cells is the most common abnormality seen

> and it's significance isn't completely understood. For now,

> patients who develop this are just monitored more closely.

>

> Dr. Shah made an interesting comment about how much money we spend

> on cancer research as opposed to the war on terror. I forget the

> exact number but we spend an awful lot more on the war than we do on

> cancer research yet for every person that was killed on 9/11, there

> are 100 who die every day from cancer.

>

> Dr. Druker mentioned that CML has actually become a bit complicated

> in the recent years with all the advancements we've had and all the

> options that are open to us. He stressed the importance of seeing

> an expert because of this.

>

> And finally, the issue of PCR's was addressed. They said that a

> negative PCR should be taken with a grain of salt so to speak.

> There are two issues that seem to be common with PCRU readings. One

> is the sensitivity of the test being low so as to not pick up the

> leukemic cells and the other is the issue of quality. If the sample

> has been sitting around degrading, it may show to be PCRU when in

> reality it could be full of leukemic cells.

>

> So that was it in a nutshell from what I remember.

> Take care,

> Tracey

>

This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.

December 14, 2006

Thanks, Tracey.

I'm one who worries about the long-term effects, so it's good to know

that there are no third eyeballs. Although with with my vision

getting worse (due to age), perhaps a third eye would help.

Take care,

Kathy

>

> Hi Everyone,

>

> I thought I'd post a bit about what was said in tonight's

> teleconference from Doctors Druker and Shah for those who didn't

get

> a chance to listen to it.

>

> I can't guarantee that my numbers are 100% accurate but this is

what

> I remember hearing from the five year follow up of the IRIS trial:

>

> 13% of patients relapsed or became resistant to Gleevec

> 8% of patients left the trial voluntarily for a variety of

> reasons...some left to pursue other options, some left because they

> were tired of all the follow up appointments/testing, some left

> because they didn't want the hassle of travelling to far away

> centres and some left for other reasons.

> 4% of patients stopped taking Gleevec due to intolerable side

effects

> 3% left the study to seek a BMT

> 1% of patients were lost somewhere and couldn't be found (Where's

> Waldo

> 2% of patients died from causes that had nothing to do with CML (I

> guess they were hit by the proverbial bus)

>

> So that leaves 69% of patients of the original 553 who started the

> trial, still in the trial and 31% of the patients who are no longer

> in the trial.

>

> Roughly 75% of patients will do marvellously on 400mg of Gleevec

and

> 25% will need something more than 400mg (either a higher dose or a

> different drug)

>

> 50% of the patients who left the trial, actually left while they

> were in CCR so we shouldn't assume that those who left, left

because

> they weren't doing well.

>

> Only 7% of patients of this group of patients have progressed to

> more advanced stages (accelerated or blast) which means that 93%

> have NOT progressed in their disease for 5 years. Now keep in mind

> the difference between relapsing and progressing. Relapsing is

when

> you lose your response but you're still in chronic phase, whereas

> progressing is when you pass the chronic phase and enter the more

> advanced phases.

>

> The risk of relapse for those who achieved CCR within 1 year is

only

> 3% after 5 years with that figure dropping in the 4th and 5th

year.

> The most relapses were seen in the second year of treatment.

>

> Dr. Druker addressed the CHF issue by saying that out of the 553

> patients in the IRIS trial, only 1 developed CHF (congestive heart

> failure) which he said is not significant enough to warrant

baseline

> echos for everyone. He did suggest however that for those who have

> risk factors for heart disease (high blood pressure, diabetes,

> family history, etc) then they should get a base line echo for

> reference.

>

> It's quite amazing how far we've come in just a couple of years.

We

> started out with Gleevec which was an amazing break through. Then

> we got the second generation kinase inhibitors (Sprycel and Tasigna)

> and now we even have a third generation drug that is showing

promise

> in early clinical trials (MK0457).

>

> I know many of us are concerned with the long term effects of

taking

> these drugs for the rest of lives but they said that so far, there

> hasn't been an issue of long term toxicities which I guess means

> that they haven't seen anyone grow a third eyeball yet.

>

> The issue of reducing dosages was addressed. They said that a year

> ago, they didn't recommend anyone lower their dose (even those on

> 800) but now that we have so many options and now that we see the

> relapse rates actually declining, they have allowed some people to

> reduce their dose from 800 to 600 or 600 to 400 but they don't

> recommend that anyone go below 400mg.

>

> They addressed relapse rates in BMT's which I found interesting.

> 10% of patients will relapse from a regular sibling matched BMT but

> 50% will relapse from an identical twin matched BMT.

>

> Trisomy 8 in PH negative cells is the most common abnormality seen

> and it's significance isn't completely understood. For now,

> patients who develop this are just monitored more closely.

>

> Dr. Shah made an interesting comment about how much money we spend

> on cancer research as opposed to the war on terror. I forget the

> exact number but we spend an awful lot more on the war than we do

on

> cancer research yet for every person that was killed on 9/11, there

> are 100 who die every day from cancer.

>

> Dr. Druker mentioned that CML has actually become a bit complicated

> in the recent years with all the advancements we've had and all the

> options that are open to us. He stressed the importance of seeing

> an expert because of this.

>

> And finally, the issue of PCR's was addressed. They said that a

> negative PCR should be taken with a grain of salt so to speak.

> There are two issues that seem to be common with PCRU readings.

One

> is the sensitivity of the test being low so as to not pick up the

> leukemic cells and the other is the issue of quality. If the

sample

> has been sitting around degrading, it may show to be PCRU when in

> reality it could be full of leukemic cells.

>

> So that was it in a nutshell from what I remember.

> Take care,

> Tracey

>

December 14, 2006

Hi Cam,

Yes that was me (Tracey from Ontario) that got the question in. I

was hoping for a more detailed answer then I got though. I didn't

quite hear what Dr. Shah said either (it's like the mic was too far

away from him when he spoke or something) but I did hear Dr. Druker

who said that if the marrow is hypocellular but the blood counts are

normal, then he doesn't worry about it since the marrow is obviously

making cells, just that the pocket of cells that he got with the BMB

happened not to have many. On the other hand, if the patient's

blood counts are low, then he monitors them more closely <insert

confused grin here>......HOW does he monitor them is what I wanted

to know and should something be done about it and what is

considered " low " .

My counts aren't as low as yours obviously but they are low and my

marrow is very hypocellular so that's why I asked the question. My

situation is also different than yours in that my counts have

continued to dip throughout my 5 years on Gleevec. I've never

needed Neupogen and I've never needed to take a drug holiday but

I've come close. My last WBC was a whopping 2.5 but thankfully my

ANC was 1.3 which is still considered to be acceptable in the eyes

of the experts. I wonder if he would consider that reason to be

monitored more closely or as long as the ANC is above 1 he wouldn't

worry, I don't know.

I guess we'll have to wait until the end of January to see the

transcript, then we'll know what Dr. Shah's answer was. Sorry I

couldn't be more helpful.

Tracey

-- In , Corakee <coralee.williams@...>

wrote:

>

> Hi Tracey,

>

> Was is you that got a question answered on the teleconference?

They said

> Tracey from Ontario and I assumed it was you. From what I can

remember your

> question had something to do with an issue that is a concern for

me‹low

> blood counts. My phone connection was kind of bad so I don¹t think

I got all

> of what Dr. Shah said. Something about if you have low cellularity

and low

> blood counts it could indicate that Gleevec might be taking out

some of your

> good cells? What else did you get out of his response to your

question?

>

> Thanks,

>

> Cam

>

> On 12/13/06 8:47 PM, " Tracey " <traceyincanada@...> wrote:

>

> >

> > Hi Everyone,

> >

> > I thought I'd post a bit about what was said in tonight's

> > teleconference from Doctors Druker and Shah for those who didn't

get

> > a chance to listen to it.

> >

> > I can't guarantee that my numbers are 100% accurate but this is

what

> > I remember hearing from the five year follow up of the IRIS

trial:

> >

> > 13% of patients relapsed or became resistant to Gleevec

> > 8% of patients left the trial voluntarily for a variety of

> > reasons...some left to pursue other options, some left because

they

> > were tired of all the follow up appointments/testing, some left

> > because they didn't want the hassle of travelling to far away

> > centres and some left for other reasons.

> > 4% of patients stopped taking Gleevec due to intolerable side

effects

> > 3% left the study to seek a BMT

> > 1% of patients were lost somewhere and couldn't be found (Where's

> > Waldo

> > 2% of patients died from causes that had nothing to do with CML

(I

> > guess they were hit by the proverbial bus)

> >

> > So that leaves 69% of patients of the original 553 who started

the

> > trial, still in the trial and 31% of the patients who are no

longer

> > in the trial.

> >

> > Roughly 75% of patients will do marvellously on 400mg of Gleevec

and

> > 25% will need something more than 400mg (either a higher dose or

a

> > different drug)

> >

> > 50% of the patients who left the trial, actually left while they

> > were in CCR so we shouldn't assume that those who left, left

because

> > they weren't doing well.

> >

> > Only 7% of patients of this group of patients have progressed to

> > more advanced stages (accelerated or blast) which means that 93%

> > have NOT progressed in their disease for 5 years. Now keep in

mind

> > the difference between relapsing and progressing. Relapsing is

when

> > you lose your response but you're still in chronic phase, whereas

> > progressing is when you pass the chronic phase and enter the more

> > advanced phases.

> >

> > The risk of relapse for those who achieved CCR within 1 year is

only

> > 3% after 5 years with that figure dropping in the 4th and 5th

year.

> > The most relapses were seen in the second year of treatment.

> >

> > Dr. Druker addressed the CHF issue by saying that out of the 553

> > patients in the IRIS trial, only 1 developed CHF (congestive

heart

> > failure) which he said is not significant enough to warrant

baseline

> > echos for everyone. He did suggest however that for those who

have

> > risk factors for heart disease (high blood pressure, diabetes,

> > family history, etc) then they should get a base line echo for

> > reference.

> >

> > It's quite amazing how far we've come in just a couple of

years. We

> > started out with Gleevec which was an amazing break through.

Then

> > we got the second generation kinase inhibitors (Sprycel and

Tasigna)

> > and now we even have a third generation drug that is showing

promise

> > in early clinical trials (MK0457).

> >

> > I know many of us are concerned with the long term effects of

taking

> > these drugs for the rest of lives but they said that so far,

there

> > hasn't been an issue of long term toxicities which I guess means

> > that they haven't seen anyone grow a third eyeball yet.

> >

> > The issue of reducing dosages was addressed. They said that a

year

> > ago, they didn't recommend anyone lower their dose (even those on

> > 800) but now that we have so many options and now that we see the

> > relapse rates actually declining, they have allowed some people

to

> > reduce their dose from 800 to 600 or 600 to 400 but they don't

> > recommend that anyone go below 400mg.

> >

> > They addressed relapse rates in BMT's which I found interesting.

> > 10% of patients will relapse from a regular sibling matched BMT

but

> > 50% will relapse from an identical twin matched BMT.

> >

> > Trisomy 8 in PH negative cells is the most common abnormality

seen

> > and it's significance isn't completely understood. For now,

> > patients who develop this are just monitored more closely.

> >

> > Dr. Shah made an interesting comment about how much money we

spend

> > on cancer research as opposed to the war on terror. I forget the

> > exact number but we spend an awful lot more on the war than we

do on

> > cancer research yet for every person that was killed on 9/11,

there

> > are 100 who die every day from cancer.

> >

> > Dr. Druker mentioned that CML has actually become a bit

complicated

> > in the recent years with all the advancements we've had and all

the

> > options that are open to us. He stressed the importance of

seeing

> > an expert because of this.

> >

> > And finally, the issue of PCR's was addressed. They said that a

> > negative PCR should be taken with a grain of salt so to speak.

> > There are two issues that seem to be common with PCRU readings.

One

> > is the sensitivity of the test being low so as to not pick up the

> > leukemic cells and the other is the issue of quality. If the

sample

> > has been sitting around degrading, it may show to be PCRU when in

> > reality it could be full of leukemic cells.

> >

> > So that was it in a nutshell from what I remember.

> > Take care,

> > Tracey

> >

>

> This email has been scanned by Barracuda Network's Anti-Virus and

Spam Firewall.

>

December 14, 2006

Thanks for all the information. I love this group im not so scared

as I was beofre I found this group.

>

> >

> > Hi Everyone,

> >

> > I thought I'd post a bit about what was said in tonight's

> > teleconference from Doctors Druker and Shah for those who didn't

get

> > a chance to listen to it.

> >

> > I can't guarantee that my numbers are 100% accurate but this is

what

> > I remember hearing from the five year follow up of the IRIS

trial:

> >

> > 13% of patients relapsed or became resistant to Gleevec

> > 8% of patients left the trial voluntarily for a variety of

> > reasons...some left to pursue other options, some left because

they

> > were tired of all the follow up appointments/testing, some left

> > because they didn't want the hassle of travelling to far away

> > centres and some left for other reasons.

> > 4% of patients stopped taking Gleevec due to intolerable side

effects

> > 3% left the study to seek a BMT

> > 1% of patients were lost somewhere and couldn't be found (Where's

> > Waldo

> > 2% of patients died from causes that had nothing to do with CML

(I

> > guess they were hit by the proverbial bus)

> >

> > So that leaves 69% of patients of the original 553 who started

the

> > trial, still in the trial and 31% of the patients who are no

longer

> > in the trial.

> >

> > Roughly 75% of patients will do marvellously on 400mg of Gleevec

and

> > 25% will need something more than 400mg (either a higher dose or

a

> > different drug)

> >

> > 50% of the patients who left the trial, actually left while they

> > were in CCR so we shouldn't assume that those who left, left

because

> > they weren't doing well.

> >

> > Only 7% of patients of this group of patients have progressed to

> > more advanced stages (accelerated or blast) which means that 93%

> > have NOT progressed in their disease for 5 years. Now keep in

mind

> > the difference between relapsing and progressing. Relapsing is

when

> > you lose your response but you're still in chronic phase, whereas

> > progressing is when you pass the chronic phase and enter the more

> > advanced phases.

> >

> > The risk of relapse for those who achieved CCR within 1 year is

only

> > 3% after 5 years with that figure dropping in the 4th and 5th

year.

> > The most relapses were seen in the second year of treatment.

> >

> > Dr. Druker addressed the CHF issue by saying that out of the 553

> > patients in the IRIS trial, only 1 developed CHF (congestive

heart

> > failure) which he said is not significant enough to warrant

baseline

> > echos for everyone. He did suggest however that for those who

have

> > risk factors for heart disease (high blood pressure, diabetes,

> > family history, etc) then they should get a base line echo for

> > reference.

> >

> > It's quite amazing how far we've come in just a couple of

years. We

> > started out with Gleevec which was an amazing break through.

Then

> > we got the second generation kinase inhibitors (Sprycel and

Tasigna)

> > and now we even have a third generation drug that is showing

promise

> > in early clinical trials (MK0457).

> >

> > I know many of us are concerned with the long term effects of

taking

> > these drugs for the rest of lives but they said that so far,

there

> > hasn't been an issue of long term toxicities which I guess means

> > that they haven't seen anyone grow a third eyeball yet.

> >

> > The issue of reducing dosages was addressed. They said that a

year

> > ago, they didn't recommend anyone lower their dose (even those on

> > 800) but now that we have so many options and now that we see the

> > relapse rates actually declining, they have allowed some people

to

> > reduce their dose from 800 to 600 or 600 to 400 but they don't

> > recommend that anyone go below 400mg.

> >

> > They addressed relapse rates in BMT's which I found interesting.

> > 10% of patients will relapse from a regular sibling matched BMT

but

> > 50% will relapse from an identical twin matched BMT.

> >

> > Trisomy 8 in PH negative cells is the most common abnormality

seen

> > and it's significance isn't completely understood. For now,

> > patients who develop this are just monitored more closely.

> >

> > Dr. Shah made an interesting comment about how much money we

spend

> > on cancer research as opposed to the war on terror. I forget the

> > exact number but we spend an awful lot more on the war than we

do on

> > cancer research yet for every person that was killed on 9/11,

there

> > are 100 who die every day from cancer.

> >

> > Dr. Druker mentioned that CML has actually become a bit

complicated

> > in the recent years with all the advancements we've had and all

the

> > options that are open to us. He stressed the importance of

seeing

> > an expert because of this.

> >

> > And finally, the issue of PCR's was addressed. They said that a

> > negative PCR should be taken with a grain of salt so to speak.

> > There are two issues that seem to be common with PCRU readings.

One

> > is the sensitivity of the test being low so as to not pick up the

> > leukemic cells and the other is the issue of quality. If the

sample

> > has been sitting around degrading, it may show to be PCRU when in

> > reality it could be full of leukemic cells.

> >

> > So that was it in a nutshell from what I remember.

> > Take care,

> > Tracey

> >

>

> This email has been scanned by Barracuda Network's Anti-Virus and

Spam Firewall.

>

December 15, 2006

Hi Tracey,

Thanks for a great report on the teleconference. I also got to hear your

question on the significance of long time hypocellular marrow and Dr.

Druker's response.

The point that Dr. Druker made about PCR testing really hits home. After

several years of PCR results hovering in the 3 log reduction range, my

latest PCR result came back as " greater than a 4 log reduction " .

I was thrilled with the result but realistic enough to know that it doesn't

drop that dramatically. My signature still contsns the PCRU result that I

got back in 2002 in Montreal's RVH as a reminder of how fickle this test is.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, 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

PCRU 5/02 at RVH (Questionable)

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

From: " Tracey " <traceyincanada@...>

Reply-

Subject: [ ] Tonight's teleconference (long)

Date: Thu, 14 Dec 2006 03:47:59 -0000

Hi Everyone,

I thought I'd post a bit about what was said in tonight's

teleconference from Doctors Druker and Shah for those who didn't get

a chance to listen to it.

I can't guarantee that my numbers are 100% accurate but this is what

I remember hearing from the five year follow up of the IRIS trial:

13% of patients relapsed or became resistant to Gleevec

8% of patients left the trial voluntarily for a variety of

reasons...some left to pursue other options, some left because they

were tired of all the follow up appointments/testing, some left

because they didn't want the hassle of travelling to far away

centres and some left for other reasons.

4% of patients stopped taking Gleevec due to intolerable side effects

3% left the study to seek a BMT

1% of patients were lost somewhere and couldn't be found (Where's

Waldo

2% of patients died from causes that had nothing to do with CML (I

guess they were hit by the proverbial bus)

So that leaves 69% of patients of the original 553 who started the

trial, still in the trial and 31% of the patients who are no longer

in the trial.

Roughly 75% of patients will do marvellously on 400mg of Gleevec and

25% will need something more than 400mg (either a higher dose or a

different drug)

50% of the patients who left the trial, actually left while they

were in CCR so we shouldn't assume that those who left, left because

they weren't doing well.

Only 7% of patients of this group of patients have progressed to

more advanced stages (accelerated or blast) which means that 93%

have NOT progressed in their disease for 5 years. Now keep in mind

the difference between relapsing and progressing. Relapsing is when

you lose your response but you're still in chronic phase, whereas

progressing is when you pass the chronic phase and enter the more

advanced phases.

The risk of relapse for those who achieved CCR within 1 year is only

3% after 5 years with that figure dropping in the 4th and 5th year.

The most relapses were seen in the second year of treatment.

Dr. Druker addressed the CHF issue by saying that out of the 553

patients in the IRIS trial, only 1 developed CHF (congestive heart

failure) which he said is not significant enough to warrant baseline

echos for everyone. He did suggest however that for those who have

risk factors for heart disease (high blood pressure, diabetes,

family history, etc) then they should get a base line echo for

reference.

It's quite amazing how far we've come in just a couple of years. We

started out with Gleevec which was an amazing break through. Then

we got the second generation kinase inhibitors (Sprycel and Tasigna)

and now we even have a third generation drug that is showing promise

in early clinical trials (MK0457).

I know many of us are concerned with the long term effects of taking

these drugs for the rest of lives but they said that so far, there

hasn't been an issue of long term toxicities which I guess means

that they haven't seen anyone grow a third eyeball yet.

The issue of reducing dosages was addressed. They said that a year

ago, they didn't recommend anyone lower their dose (even those on

800) but now that we have so many options and now that we see the

relapse rates actually declining, they have allowed some people to

reduce their dose from 800 to 600 or 600 to 400 but they don't

recommend that anyone go below 400mg.

They addressed relapse rates in BMT's which I found interesting.

10% of patients will relapse from a regular sibling matched BMT but

50% will relapse from an identical twin matched BMT.

Trisomy 8 in PH negative cells is the most common abnormality seen

and it's significance isn't completely understood. For now,

patients who develop this are just monitored more closely.

Dr. Shah made an interesting comment about how much money we spend

on cancer research as opposed to the war on terror. I forget the

exact number but we spend an awful lot more on the war than we do on

cancer research yet for every person that was killed on 9/11, there

are 100 who die every day from cancer.

Dr. Druker mentioned that CML has actually become a bit complicated

in the recent years with all the advancements we've had and all the

options that are open to us. He stressed the importance of seeing

an expert because of this.

And finally, the issue of PCR's was addressed. They said that a

negative PCR should be taken with a grain of salt so to speak.

There are two issues that seem to be common with PCRU readings. One

is the sensitivity of the test being low so as to not pick up the

leukemic cells and the other is the issue of quality. If the sample

has been sitting around degrading, it may show to be PCRU when in

reality it could be full of leukemic cells.

So that was it in a nutshell from what I remember.

Take care,

Tracey

December 15, 2006

Yes, I agree Tracey did a wonderful job of summary. I sent the summary to a

few of my friends that are always asking me questions.

I also got to ask a question at the end of the session as well and like a

few, it was not answered fully. I asked about the minimum dosage and hoped he

would also address the beginning dosage for newly diagnosed since some are on

800 mg, some 600 mg, some 400 mg and some less. The answer was that he

never recommends a dosage of less than 400 mg unless the person metabolizes the

drug slowly. I found it interesting, but sad because my onc. just allowed me

to drop to lower than 400 mg because of the side effects. Well I will just

have to live with 400 mg and be darn happy to take it.

Overall, I thought it was a great teleconference.

Happy Holidays to all.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

mtmaynor@...

In a message dated 12/14/2006 11:08:09 P.M. Eastern Standard Time,

zmiller@... writes:

Hi Tracey,

Thanks for a great report on the teleconference. I also got to hear your

question on the significance of long time hypocellular marrow and Dr.

Druker's response.

The point that Dr. Druker made about PCR testing really hits home. After

several years of PCR results hovering in the 3 log reduction range, my

latest PCR result came back as " greater than a 4 log reduction " .

I was thrilled with the result but realistic enough to know that it doesn't

drop that dramatically. My signature still contsns the PCRU result that I

got back in 2002 in Montreal's RVH as a reminder of how fickle this test is.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, 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

PCRU 5/02 at RVH (Questionable)

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: _zmiller@..._ (mailto:zmiller@...)

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

From: " Tracey " <_traceyincanada@traceyinc_ (mailto:traceyincanada@...) >

Reply- _@..._ (mailto: )

_@..._ (mailto: )

Subject: [ ] Tonight's teleconference (long)

Date: Thu, 14 Dec 2006 03:47:59 -0000

Hi Everyone,

I thought I'd post a bit about what was said in tonight's

teleconference from Doctors Druker and Shah for those who didn't get

a chance to listen to it.

I can't guarantee that my numbers are 100% accurate but this is what

I remember hearing from the five year follow up of the IRIS trial:

13% of patients relapsed or became resistant to Gleevec

8% of patients left the trial voluntarily for a variety of

reasons...some left to pursue other options, some left because they

were tired of all the follow up appointments/were tired of all the