Re: Need Some Feedback and Advice/Matt

[Guest guest]

This is what reminded me that I am in charge. I little

cliche, but it helped me focus on getting done what

I needed and wanted to get done and having the

courage to know that I was in charge. At no time

have any of my doctors really challenged me, and

instead have worked with me to find balance:

The Manifesto of the Lance Armstrong Foundation

We believe in life.

Your life.

We believe in living every minute of it with every ounce of your being.

And that you must not let cancer take control of it.

We believe in energy: channeled and fierce.

We believe in focus: getting smart and living strong.

Unity is strength. Knowledge is power. Attitude is everything.

This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed.

We help you accept the tears. Acknowledge the rage.

We believe in your right to live without pain.

We believe in information. Not pity.

And in straight, open talk about cancer.

With husbands, wives and partners. With kids, friends and neighbors. And the

people you live with, work with, cry and laugh with.

This is no time to pull punches.

You’re in the fight of your life.

We’re about the hard stuff.

Like finding the nerve to ask for a second opinion.

And a third, or a fourth, if that’s what it takes.

We’re about getting smart about clinical trials.

And if it comes to it, being in control of how your life ends.

It’s your life. You will have it your way.

We’re about the practical stuff.

Planning for surviving. Banking your sperm. Preserving your fertility.

Organizing your finances. Dealing with hospitals, specialists, insurance

companies

and employers.

It’s knowing your rights.

It’s your life.

Take no prisoners.

We’re about the fight.

We’re your champion on Capitol Hill. Your advocate with the healthcare

system. Your sponsor in the research labs.

And we know the fight never ends.

Cancer may leave your body, but it never leaves your life.

This is the Lance Armstrong Foundation.

Founded and inspired by one of the toughest cancer survivors on the planet.

LIVESTRONGâ„¢

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November of 2007

Number 1078 in the Esteemed Zavie Zero Club

In a message dated 8/16/2008 4:13:53 P.M. Eastern Daylight Time,

icynena@... writes:

Hi, Matt.

It seems that you have found great balance in your treatment. It

is great that you have input into your testing schedule. I have

pretty good communication with both my doctors but wanted to talk to

you guys first so I wouldn't offend doc when I bring it up.

NYC

>

> I have always found that

> Having a specialist and

> Having a local oncologist

> To be very beneficial. For

> Instance, if I go in the

> Hospital.... Hospital..

> Serviced by my specialist

> Four hours away, so my

> Local oncologist commicates

> With him and makes sure

> I get the best car. However

> I choose how often I

> Get all my tests done and

> Where.

>

> With warm regards,

>

> Matt Maynor

> 8132 Hollyridge Road

> ville, FL 32256

> mtmaynor@...

> 904-219-9108

>

> -----Original Message-----

> From: <icynena@...>

> Sent: Saturday, August 16, 2008 3:14 AM

> _@..._ (mailto: )

> 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

>

>

> =

>

>

> [Non-text portions of this message have been removed]

>

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-Volkswagen-Jetta-2009/expert-review?ncid=aolaut000300\

00000007 )

[Guest guest]

:

I was a classic Gleevec recipient of just about

every side effect imaginable. The worst of them

GI related. Once I switched to Tasigna, all the

GI side effects abated and my quality of life

was much better.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November of 2007

Number 1078 in the Esteemed Zavie Zero Club

In a message dated 8/16/2008 4:25:34 P.M. Eastern Daylight Time, icynena

@ writes:

Dear Matt,

Thank you so much for sending me the Manifesto. If you don't

mind me asking, why did you switch from Gleevec to Tasigna? How has

taking Tasigna differed from your experience from Gleevec? I just

want to keep my options open in case the edema in my feet ever

becomes so much of an issue that I have to switch meds.

NYC

--- In _@..._ (mailto: ) , mtmaynor@...

wrote:

>

> This is what reminded me that I am in charge. I little

> cliche, but it helped me focus on getting done what

> I needed and wanted to get done and having the

> courage to know that I was in charge. At no time

> have any of my doctors really challenged me, and

> instead have worked with me to find balance:

>

>

> The Manifesto of the Lance Armstrong Foundation

> We believe in life.

> Your life.

> We believe in living every minute of it with every ounce of your

being.

> And that you must not let cancer take control of it.

> We believe in energy: channeled and fierce.

> We believe in focus: getting smart and living strong.

> Unity is strength. Knowledge is power. Attitude is everything.

> This is the Lance Armstrong Foundation.

> We kick in the moment you’re diagnosed.

> We help you accept the tears. Acknowledge the rage.

> We believe in your right to live without pain.

> We believe in information. Not pity.

> And in straight, open talk about cancer.

> With husbands, wives and partners. With kids, friends and

neighbors. And the

> people you live with, work with, cry and laugh with.

> This is no time to pull punches.

> You’re in the fight of your life.

> We’re about the hard stuff.

> Like finding the nerve to ask for a second opinion.

> And a third, or a fourth, if that’s what it takes.

> We’re about getting smart about clinical trials.

> And if it comes to it, being in control of how your life ends.

> It’s your life. You will have it your way.

> We’re about the practical stuff.

> Planning for surviving. Banking your sperm. Preserving your

fertility.

> Organizing your finances. Dealing with hospitals, specialists,

insurance companies

> and employers.

> It’s knowing your rights.

> It’s your life.

> Take no prisoners.

> We’re about the fight.

> We’re your champion on Capitol Hill. Your advocate with the

healthcare

> system. Your sponsor in the research labs.

> And we know the fight never ends.

> Cancer may leave your body, but it never leaves your life.

> This is the Lance Armstrong Foundation.

> Founded and inspired by one of the toughest cancer survivors on

the planet.

> LIVESTRONGâ„¢

>

>

> With the warmest regards,

>

> Matt

> CML of Florida

> Dx January of 2005

> Gleevec March of 2005

> Tasigna November of 2007

> Number 1078 in the Esteemed Zavie Zero Club

>

>

> In a message dated 8/16/2008 4:13:53 P.M. Eastern Daylight Time,

> icynena@... writes:

>

>

>

>

> Hi, Matt.

> It seems that you have found great balance in your treatment. It

> is great that you have input into your testing schedule. I have

> pretty good communication with both my doctors but wanted to talk

to

> you guys first so I wouldn't offend doc when I bring it up.

>

>

> NYC

>

>

> >

> > I have always found that

> > Having a specialist and

> > Having a local oncologist

> > To be very beneficial. For

> > Instance, if I go in the

> > Hospital.... Hospital..

> > Serviced by my specialist

> > Four hours away, so my

> > Local oncologist commicates

> > With him and makes sure

> > I get the best car. However

> > I choose how often I

> > Get all my tests done and

> > Where.

> >

> > With warm regards,

> >

> > Matt Maynor

> > 8132 Hollyridge Road

> > ville, FL 32256

> > mtmaynor@

> > 904-219-9108

> >

> > -----Original Message-----

> > From: <icynena@>

> > Sent: Saturday, August 16, 2008 3:14 AM

> > _@..._ (mailto:_@..._

(mailto: ) )

> > 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, Matt.

It seems that you have found great balance in your treatment. It

is great that you have input into your testing schedule. I have

pretty good communication with both my doctors but wanted to talk to

you guys first so I wouldn't offend doc when I bring it up.

NYC

>

> I have always found that

> Having a specialist and

> Having a local oncologist

> To be very beneficial. For

> Instance, if I go in the

> Hospital....I cannot be

> Serviced by my specialist

> Four hours away, so my

> Local oncologist commicates

> With him and makes sure

> I get the best car. However

> I choose how often I

> Get all my tests done and

> Where.

>

> With warm regards,

>

> Matt Maynor

> 8132 Hollyridge Road

> ville, FL 32256

> mtmaynor@...

> 904-219-9108

>

> [ ] 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 Matt,

Thank you so much for sending me the Manifesto. If you don't

mind me asking, why did you switch from Gleevec to Tasigna? How has

taking Tasigna differed from your experience from Gleevec? I just

want to keep my options open in case the edema in my feet ever

becomes so much of an issue that I have to switch meds.

NYC

> >

> > I have always found that

> > Having a specialist and

> > Having a local oncologist

> > To be very beneficial. For

> > Instance, if I go in the

> > Hospital.... Hospital..

> > Serviced by my specialist

> > Four hours away, so my

> > Local oncologist commicates

> > With him and makes sure

> > I get the best car. However

> > I choose how often I

> > Get all my tests done and

> > Where.

> >

> > With warm regards,

> >

> > Matt Maynor

> > 8132 Hollyridge Road

> > ville, FL 32256

> > mtmaynor@

> > 904-219-9108

> >

> > -----Original Message-----

> > From: <icynena@>

> > Sent: Saturday, August 16, 2008 3:14 AM

> > _@..._ (mailto: )

> > 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

> >

> >

> > =

> >

> >

> > [Non-text portions of this message have been removed]

> >

>

>

>

>

>

>

>

>

>

>

>

> **************Looking for a car that's sporty, fun and fits in your

budget?

> Read reviews on AOL Autos.

> (http://autos.aol.com/cars-Volkswagen-Jetta-2009/expert-review?

ncid=aolaut00030000000007 )

>

>

>

[Guest guest]

,

I was on Gleevec and had (like Matt) every side effect there was-rash being the

worst!! Went to Sprycel-ok for three years but not all that good in the GI

department, after three years of tolerating it I had Plural Effusion and went to

Tasigna and have NO side effects. Except maybe an increased appetite but I can

control that. I have had CML for 4 and a half years and this is the best I have

ever felt. And I am not even PCRU yeat.0.032. all blood work normal.

Hang in there every medicine works differently for each person.

Take care

Sharon T

_____

From: [mailto: ] On Behalf Of

mtmaynor@...

Sent: Saturday, August 16, 2008 1:54 PM

Subject: Re: [ ] Need Some Feedback and Advice/Matt

:

I was a classic Gleevec recipient of just about

every side effect imaginable. The worst of them

GI related. Once I switched to Tasigna, all the

GI side effects abated and my quality of life

was much better.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November of 2007

Number 1078 in the Esteemed Zavie Zero Club

In a message dated 8/16/2008 4:25:34 P.M. Eastern Daylight Time, icynena

@ writes:

Dear Matt,

Thank you so much for sending me the Manifesto. If you don't

mind me asking, why did you switch from Gleevec to Tasigna? How has

taking Tasigna differed from your experience from Gleevec? I just

want to keep my options open in case the edema in my feet ever

becomes so much of an issue that I have to switch meds.

NYC

> >

> > I have always found that

> > Having a specialist and

> > Having a local oncologist

> > To be very beneficial. For

> > Instance, if I go in the

> > Hospital.... Hospital..

> > Serviced by my specialist

> > Four hours away, so my

> > Local oncologist commicates

> > With him and makes sure

> > I get the best car. However

> > I choose how often I

> > Get all my tests done and

> > Where.

> >

> > With warm regards,

> >

> > Matt Maynor

> > 8132 Hollyridge Road

> > ville, FL 32256

> > mtmaynor@

> > 904-219-9108

> >

> > [ ] 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

> >

> >

> > =

> >

> >

> >