RE: Need Some Feedback and Advice-Zavie

[Guest guest]

Dear Zavie,

Thank you for your advice. Actually, Dr. Schuster has done

everything perfectly, as far as I have seen. It is Dr. C. that I

felt was maybe testing too often. I was told by Anjana, however,

that it is better to have more monitoring during this time as I am on

my second year of Gleevec and that is considered the dangerous time

for possible Gleevec relapse. This does ring true in conjunction

with a lot of the literature that I have read regarding Gleevec

responses. You see, I love both doctors. Perhaps I was just hopeful

that I could push the medical stuff to the side a little more and

have less CML focus all the time. Alas, I am receiving great care so

I should probably just let the doctors do their job and take down my

shingle.

NYC

>

> Hi ,

>

> There are differences among the top CML specialists on how often to

test. If

> you are unhappy with Dr. Shuster's testing regime then I would

discuss it

> with him. Explain your concerns and desires to him. If he agrees to

say a

> PCR every 3 months and a BMB once a year then you have it made. If

you can't

> work it out with him then you need to find another CML specialist

that suits

> your needs. It is important to always have access to a top CML

specialist.

> Your local doctor doesn't fall into that class.

>

> I'm happy with my current schedule. WBCs every month (I need them

more often

> because I have to monitor my INR), PCRs every 3 months and a BMB

every 18-24

> months. I just switched the BMB from once every 12 months to once

every 2

> years. This was after a discussion with my local CML specialist. I

still

> have an ongoing relationship with Dr. Druker and he is my ace in

the hole if

> anything changes with my CML.

>

> Always remember that PCR results can fluctuate by a half a log (up

or down)

> and that you need 3 consecutive PCRs to detect a trend.

>

> Zavie

>

> Zavie (age 70)

> 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

> 3.6 log reduction Apr/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: [mailto: ] On Behalf

Of

> Sent: August 16, 2008 3:15 AM

>

> Subject: [ ] Need Some Feedback and Advice

>

> Dear Friends,

> I hope everyone is doing well. I would like to warn you that

> this is going to be a long post, however, I ask that you bear with

me

> as you all will ultimately help me to make a big decision regarding

> my current physician situation.

> As most of you know, I was diagnosed in July, 2007 and have been

> on Gleevec ever since with my last PCR at 0.02 in July, 2008. I

> promptly fired my first hem/onc in October of 2007 when I realized

> that I knew more about current CML guidelines than he did. A friend

> of mine, whom I met through the Leukemia Society, referred me to

her

> hem/onc who has always been very thorough and has a wonderful

bedside

> manner as well as being knowledgeable about CML. We will call

> him " Dr. C. " Since diagnosis, I have also been seeing a CML

> Specialist at Cornell Division of NY Presbyterian named Dr.

> Schuster. He is the director of BMT and Clinical Research and

> actually directed the Gleevec Clinical trials when they first came

to

> NY.

> Here is my dilemma...Dr. C. usually sees me every three weeks

> upon which he performs a CBC as well as a PCR once a month. I

cannot

> begin to tell you how stressful it is to have a PCR that often in

> terms of waiting for results. He does this because he feels that it

> is better to be " on top " of things in order to identify a problem

> early on. I just made a year since diagnosis in July and I had some

> questions about why I haven't had a second BMB yet and I was

> initially told by Dr. C that we could put it off a couple of months

> because my numbers were so good. I think this is ok because Dr.

> Schuster has concurred with this but has also told me that I can

> choose to have my BMB in the hospital if I want to. The thing that

> bothers me is that I just found out from the friend that referred

me

> that Dr. C has done a BMB on her every six months since diagnosis.

> Why the different treatment approaches I wonder?

> Anyhoo, I just recently discussed this issue with Annie Baggett

> and she is absolutely wonderful and told me that I have to choose a

> situation that I feel comfortable with. I decided that I am going

to

> tell Dr. C that I feel that I should be having CBCs every six weeks

> and PCRs every three months, as per CML guidelines. I am just

> concerned that if he stonewalls me and refuses to change his visit

> and testing schedule, I will have to make a decision to leave him.

I

> am not sure if I am prepared to do that. I do understand, however,

> that the Specialist at Cornell is perfectly capable of monitoring

my

> disease but, I just liked having the extra checkups. It's almost

> like a catch 22. There would also be the other benefit of not

having

> so many co-payments.

> You see, I initially saw a local doc and the Specialist because I

> felt that the local onc didn't know enough about CML. Now my local

> onc is really knowledgeable about CML just like the specialist is,

he

> just believes in more frequent monitoring. I have discussed this in

> detail with my husband and he feels that it is really a personal

> decision and that I would be better suited asking you guys what you

> think since you are in the struggle with me. Am I wasting time and

> money at this point having two doctors? Am I better off just seeing

> the Specialist at Cornell? Will I be losing that personalized

> attention if I cut the local hem/onc out of the equation? How

should

> I broach altering the testing schedule with my local onc? Should I

> question him about the differences in treatment between his other

CML

> patient and I? Any and all opinions and feedback would be greatly

> appreciated.

>

> Love,

>

> NYC

>

>

>

>

>

>

[Guest guest]

Hi ,

I don't understand the comment about relapsing. The literature says that if

you achieve a 3 log reduction (MMR) within 12 months of diagnosis there is

no chance (Zero) that you will ever relapse.

After a while you will get comfortable waiting for the PCR results. Get the

testing done as often as it suits your comfort level.

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Sent: August 16, 2008 4:01 PM

Subject: Re: [ ] Need Some Feedback and Advice-Zavie

Dear Zavie,

Thank you for your advice. Actually, Dr. Schuster has done

everything perfectly, as far as I have seen. It is Dr. C. that I

felt was maybe testing too often. I was told by Anjana, however,

that it is better to have more monitoring during this time as I am on

my second year of Gleevec and that is considered the dangerous time

for possible Gleevec relapse. This does ring true in conjunction

with a lot of the literature that I have read regarding Gleevec

responses. You see, I love both doctors. Perhaps I was just hopeful

that I could push the medical stuff to the side a little more and

have less CML focus all the time. Alas, I am receiving great care so

I should probably just let the doctors do their job and take down my

shingle.

NYC

>

> Hi ,

>

> There are differences among the top CML specialists on how often to

test. If

> you are unhappy with Dr. Shuster's testing regime then I would

discuss it

> with him. Explain your concerns and desires to him. If he agrees to

say a

> PCR every 3 months and a BMB once a year then you have it made. If

you can't

> work it out with him then you need to find another CML specialist

that suits

> your needs. It is important to always have access to a top CML

specialist.

> Your local doctor doesn't fall into that class.

>

> I'm happy with my current schedule. WBCs every month (I need them

more often

> because I have to monitor my INR), PCRs every 3 months and a BMB

every 18-24

> months. I just switched the BMB from once every 12 months to once

every 2

> years. This was after a discussion with my local CML specialist. I

still

> have an ongoing relationship with Dr. Druker and he is my ace in

the hole if

> anything changes with my CML.

>

> Always remember that PCR results can fluctuate by a half a log (up

or down)

> and that you need 3 consecutive PCRs to detect a trend.

>

> Zavie

>

> Zavie (age 70)

> 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

> 3.6 log reduction Apr/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

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

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

Of

> Sent: August 16, 2008 3:15 AM

> groups (DOT) <mailto:%40> com

> Subject: [ ] Need Some Feedback and Advice

>

> Dear Friends,

> I hope everyone is doing well. I would like to warn you that

> this is going to be a long post, however, I ask that you bear with

me

> as you all will ultimately help me to make a big decision regarding

> my current physician situation.

> As most of you know, I was diagnosed in July, 2007 and have been

> on Gleevec ever since with my last PCR at 0.02 in July, 2008. I

> promptly fired my first hem/onc in October of 2007 when I realized

> that I knew more about current CML guidelines than he did. A friend

> of mine, whom I met through the Leukemia Society, referred me to

her

> hem/onc who has always been very thorough and has a wonderful

bedside

> manner as well as being knowledgeable about CML. We will call

> him " Dr. C. " Since diagnosis, I have also been seeing a CML

> Specialist at Cornell Division of NY Presbyterian named Dr.

> Schuster. He is the director of BMT and Clinical Research and

> actually directed the Gleevec Clinical trials when they first came

to

> NY.

> Here is my dilemma...Dr. C. usually sees me every three weeks

> upon which he performs a CBC as well as a PCR once a month. I

cannot

> begin to tell you how stressful it is to have a PCR that often in

> terms of waiting for results. He does this because he feels that it

> is better to be " on top " of things in order to identify a problem

> early on. I just made a year since diagnosis in July and I had some

> questions about why I haven't had a second BMB yet and I was

> initially told by Dr. C that we could put it off a couple of months

> because my numbers were so good. I think this is ok because Dr.

> Schuster has concurred with this but has also told me that I can

> choose to have my BMB in the hospital if I want to. The thing that

> bothers me is that I just found out from the friend that referred

me

> that Dr. C has done a BMB on her every six months since diagnosis.

> Why the different treatment approaches I wonder?

> Anyhoo, I just recently discussed this issue with Annie Baggett

> and she is absolutely wonderful and told me that I have to choose a

> situation that I feel comfortable with. I decided that I am going

to

> tell Dr. C that I feel that I should be having CBCs every six weeks

> and PCRs every three months, as per CML guidelines. I am just

> concerned that if he stonewalls me and refuses to change his visit

> and testing schedule, I will have to make a decision to leave him.

I

> am not sure if I am prepared to do that. I do understand, however,

> that the Specialist at Cornell is perfectly capable of monitoring

my

> disease but, I just liked having the extra checkups. It's almost

> like a catch 22. There would also be the other benefit of not

having

> so many co-payments.

> You see, I initially saw a local doc and the Specialist because I

> felt that the local onc didn't know enough about CML. Now my local

> onc is really knowledgeable about CML just like the specialist is,

he

> just believes in more frequent monitoring. I have discussed this in

> detail with my husband and he feels that it is really a personal

> decision and that I would be better suited asking you guys what you

> think since you are in the struggle with me. Am I wasting time and

> money at this point having two doctors? Am I better off just seeing

> the Specialist at Cornell? Will I be losing that personalized

> attention if I cut the local hem/onc out of the equation? How

should

> I broach altering the testing schedule with my local onc? Should I

> question him about the differences in treatment between his other

CML

> patient and I? Any and all opinions and feedback would be greatly

> appreciated.

>

> Love,

>

> NYC

>

>

>

>

>

>

[Guest guest]

Dear Zavie,

The exact explanation was that the second year on Gleevec is the

worst year for relapse and that there is some danger in the third

year, as well. Upon diagnosis my PCR was 11.25% so wouldn't that

mean that with my most current PCR result in July 2008 of 0.02% that

I have not reached 3 log reduction yet? Wouldn't 3 log reduction for

me be less than or equal to 0.01125? So at 0.02 what is my log

reduction and where does it leave me in terms of the Gleevec data?

So, are you saying that it is incorrect that the second year on

Gleevec is the worst fear for relapse? Please elaborate as I love to

acquire as much information as I possibly can.

Thanks so much, Zavie.

NYC

> >

> > Hi ,

> >

> > There are differences among the top CML specialists on how often

to

> test. If

> > you are unhappy with Dr. Shuster's testing regime then I would

> discuss it

> > with him. Explain your concerns and desires to him. If he agrees

to

> say a

> > PCR every 3 months and a BMB once a year then you have it made.

If

> you can't

> > work it out with him then you need to find another CML specialist

> that suits

> > your needs. It is important to always have access to a top CML

> specialist.

> > Your local doctor doesn't fall into that class.

> >

> > I'm happy with my current schedule. WBCs every month (I need them

> more often

> > because I have to monitor my INR), PCRs every 3 months and a BMB

> every 18-24

> > months. I just switched the BMB from once every 12 months to once

> every 2

> > years. This was after a discussion with my local CML specialist.

I

> still

> > have an ongoing relationship with Dr. Druker and he is my ace in

> the hole if

> > anything changes with my CML.

> >

> > Always remember that PCR results can fluctuate by a half a log

(up

> or down)

> > and that you need 3 consecutive PCRs to detect a trend.

> >

> > Zavie

> >

> > Zavie (age 70)

> > 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

> > 3.6 log reduction Apr/08

> > e-mail: zmiller@

> > Tel: 613-726-1117

> > Fax: 309-296-0807

> > Cell: 613-282-0204

> > ID: zaviem

> > YM: zaviemiller

> > Skype: Zavie

> >

> > _____

> >

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

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

Behalf

> Of

> > Sent: August 16, 2008 3:15 AM

> > groups (DOT) <mailto:%40> com

> > Subject: [ ] Need Some Feedback and Advice

> >

> > Dear Friends,

> > I hope everyone is doing well. I would like to warn you that

> > this is going to be a long post, however, I ask that you bear

with

> me

> > as you all will ultimately help me to make a big decision

regarding

> > my current physician situation.

> > As most of you know, I was diagnosed in July, 2007 and have been

> > on Gleevec ever since with my last PCR at 0.02 in July, 2008. I

> > promptly fired my first hem/onc in October of 2007 when I

realized

> > that I knew more about current CML guidelines than he did. A

friend

> > of mine, whom I met through the Leukemia Society, referred me to

> her

> > hem/onc who has always been very thorough and has a wonderful

> bedside

> > manner as well as being knowledgeable about CML. We will call

> > him " Dr. C. " Since diagnosis, I have also been seeing a CML

> > Specialist at Cornell Division of NY Presbyterian named Dr.

> > Schuster. He is the director of BMT and Clinical Research and

> > actually directed the Gleevec Clinical trials when they first

came

> to

> > NY.

> > Here is my dilemma...Dr. C. usually sees me every three weeks

> > upon which he performs a CBC as well as a PCR once a month. I

> cannot

> > begin to tell you how stressful it is to have a PCR that often in

> > terms of waiting for results. He does this because he feels that

it

> > is better to be " on top " of things in order to identify a problem

> > early on. I just made a year since diagnosis in July and I had

some

> > questions about why I haven't had a second BMB yet and I was

> > initially told by Dr. C that we could put it off a couple of

months

> > because my numbers were so good. I think this is ok because Dr.

> > Schuster has concurred with this but has also told me that I can

> > choose to have my BMB in the hospital if I want to. The thing

that

> > bothers me is that I just found out from the friend that referred

> me

> > that Dr. C has done a BMB on her every six months since

diagnosis.

> > Why the different treatment approaches I wonder?

> > Anyhoo, I just recently discussed this issue with Annie Baggett

> > and she is absolutely wonderful and told me that I have to choose

a

> > situation that I feel comfortable with. I decided that I am going

> to

> > tell Dr. C that I feel that I should be having CBCs every six

weeks

> > and PCRs every three months, as per CML guidelines. I am just

> > concerned that if he stonewalls me and refuses to change his

visit

> > and testing schedule, I will have to make a decision to leave

him.

> I

> > am not sure if I am prepared to do that. I do understand,

however,

> > that the Specialist at Cornell is perfectly capable of monitoring

> my

> > disease but, I just liked having the extra checkups. It's almost

> > like a catch 22. There would also be the other benefit of not

> having

> > so many co-payments.

> > You see, I initially saw a local doc and the Specialist because I

> > felt that the local onc didn't know enough about CML. Now my

local

> > onc is really knowledgeable about CML just like the specialist

is,

> he

> > just believes in more frequent monitoring. I have discussed this

in

> > detail with my husband and he feels that it is really a personal

> > decision and that I would be better suited asking you guys what

you

> > think since you are in the struggle with me. Am I wasting time

and

> > money at this point having two doctors? Am I better off just

seeing

> > the Specialist at Cornell? Will I be losing that personalized

> > attention if I cut the local hem/onc out of the equation? How

> should

> > I broach altering the testing schedule with my local onc? Should

I

> > question him about the differences in treatment between his other

> CML

> > patient and I? Any and all opinions and feedback would be greatly

> > appreciated.

> >

> > Love,

> >

> > NYC

> >

> >

> >

> >

> >

> >

[Guest guest]

When I got down to 3.5 reduction or 0.001% PCR - MMR

my specialist was very happy - first year - all he ever said

was now we watch for resistance of the drug.

My CML specialist is not in the least concerned if I ever reach PCRU

or not as he can manage my condition at 0.001%.

His view is that at times to get to PCRU maybe unrealistic and at

times the % can bounce around a little bit - - we are not in a " CURE "

but a management regime.

got down to PCRU on her second anniversary - so it took her a

full 2 years on glivec

I would not unnecessarily be worried - if after the first year

you were 0.02% - it is not a race to get to some magic number

- everyone is different.

Question your specialist when next you see him if still concerned

Sue

> > >

> > > Hi ,

> > >

> > > There are differences among the top CML specialists on how

often

> to

> > test. If

> > > you are unhappy with Dr. Shuster's testing regime then I would

> > discuss it

> > > with him. Explain your concerns and desires to him. If he

agrees

> to

> > say a

> > > PCR every 3 months and a BMB once a year then you have it made.

> If

> > you can't

> > > work it out with him then you need to find another CML

specialist

> > that suits

> > > your needs. It is important to always have access to a top CML

> > specialist.

> > > Your local doctor doesn't fall into that class.

> > >

> > > I'm happy with my current schedule. WBCs every month (I need

them

> > more often

> > > because I have to monitor my INR), PCRs every 3 months and a

BMB

> > every 18-24

> > > months. I just switched the BMB from once every 12 months to

once

> > every 2

> > > years. This was after a discussion with my local CML

specialist.

> I

> > still

> > > have an ongoing relationship with Dr. Druker and he is my ace

in

> > the hole if

> > > anything changes with my CML.

> > >

> > > Always remember that PCR results can fluctuate by a half a log

> (up

> > or down)

> > > and that you need 3 consecutive PCRs to detect a trend.

> > >

> > > Zavie

> > >

> > > Zavie (age 70)

> > > 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

> > > 3.6 log reduction Apr/08

> > > e-mail: zmiller@

> > > Tel: 613-726-1117

> > > Fax: 309-296-0807

> > > Cell: 613-282-0204

> > > ID: zaviem

> > > YM: zaviemiller

> > > Skype: Zavie

> > >

> > > _____

> > >

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

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

> Behalf

> > Of

> > > Sent: August 16, 2008 3:15 AM

> > > groups (DOT) <mailto:%40> com

> > > Subject: [ ] Need Some Feedback and Advice

> > >

> > > Dear Friends,

> > > I hope everyone is doing well. I would like to warn you that

> > > this is going to be a long post, however, I ask that you bear

> with

> > me

> > > as you all will ultimately help me to make a big decision

> regarding

> > > my current physician situation.

> > > As most of you know, I was diagnosed in July, 2007 and have

been

> > > on Gleevec ever since with my last PCR at 0.02 in July, 2008. I

> > > promptly fired my first hem/onc in October of 2007 when I

> realized

> > > that I knew more about current CML guidelines than he did. A

> friend

> > > of mine, whom I met through the Leukemia Society, referred me

to

> > her

> > > hem/onc who has always been very thorough and has a wonderful

> > bedside

> > > manner as well as being knowledgeable about CML. We will call

> > > him " Dr. C. " Since diagnosis, I have also been seeing a CML

> > > Specialist at Cornell Division of NY Presbyterian named Dr.

> > > Schuster. He is the director of BMT and Clinical Research and

> > > actually directed the Gleevec Clinical trials when they first

> came

> > to

> > > NY.

> > > Here is my dilemma...Dr. C. usually sees me every three weeks

> > > upon which he performs a CBC as well as a PCR once a month. I

> > cannot

> > > begin to tell you how stressful it is to have a PCR that often

in

> > > terms of waiting for results. He does this because he feels

that

> it

> > > is better to be " on top " of things in order to identify a

problem

> > > early on. I just made a year since diagnosis in July and I had

> some

> > > questions about why I haven't had a second BMB yet and I was

> > > initially told by Dr. C that we could put it off a couple of

> months

> > > because my numbers were so good. I think this is ok because Dr.

> > > Schuster has concurred with this but has also told me that I

can

> > > choose to have my BMB in the hospital if I want to. The thing

> that

> > > bothers me is that I just found out from the friend that

referred

> > me

> > > that Dr. C has done a BMB on her every six months since

> diagnosis.

> > > Why the different treatment approaches I wonder?

> > > Anyhoo, I just recently discussed this issue with Annie Baggett

> > > and she is absolutely wonderful and told me that I have to

choose

> a

> > > situation that I feel comfortable with. I decided that I am

going

> > to

> > > tell Dr. C that I feel that I should be having CBCs every six

> weeks

> > > and PCRs every three months, as per CML guidelines. I am just

> > > concerned that if he stonewalls me and refuses to change his

> visit

> > > and testing schedule, I will have to make a decision to leave

> him.

> > I

> > > am not sure if I am prepared to do that. I do understand,

> however,

> > > that the Specialist at Cornell is perfectly capable of

monitoring

> > my

> > > disease but, I just liked having the extra checkups. It's

almost

> > > like a catch 22. There would also be the other benefit of not

> > having

> > > so many co-payments.

> > > You see, I initially saw a local doc and the Specialist because

I

> > > felt that the local onc didn't know enough about CML. Now my

> local

> > > onc is really knowledgeable about CML just like the specialist

> is,

> > he

> > > just believes in more frequent monitoring. I have discussed

this

> in

> > > detail with my husband and he feels that it is really a

personal

> > > decision and that I would be better suited asking you guys what

> you

> > > think since you are in the struggle with me. Am I wasting time

> and

> > > money at this point having two doctors? Am I better off just

> seeing

> > > the Specialist at Cornell? Will I be losing that personalized

> > > attention if I cut the local hem/onc out of the equation? How

> > should

> > > I broach altering the testing schedule with my local onc?

Should

> I

> > > question him about the differences in treatment between his

other

> > CML

> > > patient and I? Any and all opinions and feedback would be

greatly

> > > appreciated.

> > >

> > > Love,

> > >

> > > NYC

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi ,

Your statement needs to be qualified. Is the second year danger for all CML

patients, patients who achieved CCR in year one or patients who achieved MMR

in year one. I suspect the danger of relapse in year two doesn't include

those CCR and MMR patients.

I wouldn't take your PCR result too literally. It could easily be a half log

higher or lower depending on the accuracy of the testing lab. Since PCR

testing has not yet been standardized your best bet is to get the testing

done at a lab that is accurate and consistent and then watch the trend.

Also, your log reduction should be compared to your lab's average PCR value

for newly diagnosed patients rather than your actual PCR at diagnosis. You

are well within the error limits of a 3 log reduction.

I have never read or heard any of the CML experts say that there was an

increased danger of relapse in the second year of CML treatment. In fact,

everything I have read says that once you achieve CCR, the relapse rate

continues to go down.

Zavie

_____

From: [mailto: ] On Behalf Of

Sent: August 17, 2008 2:48 AM

Subject: Re: [ ] Need Some Feedback and Advice-Zavie

Dear Zavie,

The exact explanation was that the second year on Gleevec is the

worst year for relapse and that there is some danger in the third

year, as well. Upon diagnosis my PCR was 11.25% so wouldn't that

mean that with my most current PCR result in July 2008 of 0.02% that

I have not reached 3 log reduction yet? Wouldn't 3 log reduction for

me be less than or equal to 0.01125? So at 0.02 what is my log

reduction and where does it leave me in terms of the Gleevec data?

So, are you saying that it is incorrect that the second year on

Gleevec is the worst fear for relapse? Please elaborate as I love to

acquire as much information as I possibly can.

Thanks so much, Zavie.

NYC

> >

> > Hi ,

> >

> > There are differences among the top CML specialists on how often

to

> test. If

> > you are unhappy with Dr. Shuster's testing regime then I would

> discuss it

> > with him. Explain your concerns and desires to him. If he agrees

to

> say a

> > PCR every 3 months and a BMB once a year then you have it made.

If

> you can't

> > work it out with him then you need to find another CML specialist

> that suits

> > your needs. It is important to always have access to a top CML

> specialist.

> > Your local doctor doesn't fall into that class.

> >

> > I'm happy with my current schedule. WBCs every month (I need them

> more often

> > because I have to monitor my INR), PCRs every 3 months and a BMB

> every 18-24

> > months. I just switched the BMB from once every 12 months to once

> every 2

> > years. This was after a discussion with my local CML specialist.

I

> still

> > have an ongoing relationship with Dr. Druker and he is my ace in

> the hole if

> > anything changes with my CML.

> >

> > Always remember that PCR results can fluctuate by a half a log

(up

> or down)

> > and that you need 3 consecutive PCRs to detect a trend.

> >

> > Zavie

> >

> > Zavie (age 70)

> > 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

> > 3.6 log reduction Apr/08

> > e-mail: zmiller@

> > Tel: 613-726-1117

> > Fax: 309-296-0807

> > Cell: 613-282-0204

> > ID: zaviem

> > YM: zaviemiller

> > Skype: Zavie

> >

> > _____

> >

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

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

Behalf

> Of

> > Sent: August 16, 2008 3:15 AM

> > groups (DOT) <mailto:%40> com

> > Subject: [ ] Need Some Feedback and Advice

> >

> > Dear Friends,

> > I hope everyone is doing well. I would like to warn you that

> > this is going to be a long post, however, I ask that you bear

with

> me

> > as you all will ultimately help me to make a big decision

regarding

> > my current physician situation.

> > As most of you know, I was diagnosed in July, 2007 and have been

> > on Gleevec ever since with my last PCR at 0.02 in July, 2008. I

> > promptly fired my first hem/onc in October of 2007 when I

realized

> > that I knew more about current CML guidelines than he did. A

friend

> > of mine, whom I met through the Leukemia Society, referred me to

> her

> > hem/onc who has always been very thorough and has a wonderful

> bedside

> > manner as well as being knowledgeable about CML. We will call

> > him " Dr. C. " Since diagnosis, I have also been seeing a CML

> > Specialist at Cornell Division of NY Presbyterian named Dr.

> > Schuster. He is the director of BMT and Clinical Research and

> > actually directed the Gleevec Clinical trials when they first

came

> to

> > NY.

> > Here is my dilemma...Dr. C. usually sees me every three weeks

> > upon which he performs a CBC as well as a PCR once a month. I

> cannot

> > begin to tell you how stressful it is to have a PCR that often in

> > terms of waiting for results. He does this because he feels that

it

> > is better to be " on top " of things in order to identify a problem

> > early on. I just made a year since diagnosis in July and I had

some

> > questions about why I haven't had a second BMB yet and I was

> > initially told by Dr. C that we could put it off a couple of

months

> > because my numbers were so good. I think this is ok because Dr.

> > Schuster has concurred with this but has also told me that I can

> > choose to have my BMB in the hospital if I want to. The thing

that

> > bothers me is that I just found out from the friend that referred

> me

> > that Dr. C has done a BMB on her every six months since

diagnosis.

> > Why the different treatment approaches I wonder?

> > Anyhoo, I just recently discussed this issue with Annie Baggett

> > and she is absolutely wonderful and told me that I have to choose

a

> > situation that I feel comfortable with. I decided that I am going

> to

> > tell Dr. C that I feel that I should be having CBCs every six

weeks

> > and PCRs every three months, as per CML guidelines. I am just

> > concerned that if he stonewalls me and refuses to change his

visit

> > and testing schedule, I will have to make a decision to leave

him.

> I

> > am not sure if I am prepared to do that. I do understand,

however,

> > that the Specialist at Cornell is perfectly capable of monitoring

> my

> > disease but, I just liked having the extra checkups. It's almost

> > like a catch 22. There would also be the other benefit of not

> having

> > so many co-payments.

> > You see, I initially saw a local doc and the Specialist because I

> > felt that the local onc didn't know enough about CML. Now my

local

> > onc is really knowledgeable about CML just like the specialist

is,

> he

> > just believes in more frequent monitoring. I have discussed this

in

> > detail with my husband and he feels that it is really a personal

> > decision and that I would be better suited asking you guys what

you

> > think since you are in the struggle with me. Am I wasting time

and

> > money at this point having two doctors? Am I better off just

seeing

> > the Specialist at Cornell? Will I be losing that personalized

> > attention if I cut the local hem/onc out of the equation? How

> should

> > I broach altering the testing schedule with my local onc? Should

I

> > question him about the differences in treatment between his other

> CML

> > patient and I? Any and all opinions and feedback would be greatly

> > appreciated.

> >

> > Love,

> >

> > NYC

> >

> >

> >

> >

> >

> >