RE: Need Some Feedback and Advice

August 16, 2008

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

August 16, 2008

Hi ,

Have you ever asked the local doc why he does more frequent testing

than what is considered " the norm " ? Perhaps he has a clinical reason

for this. If he has no reason, then you could always let him know

that you would prefer to have the more common schedule of testing

without sounding confrontational. Just because you express your

opinion doesn't mean that you have to dump him if he doesn't agree

with it.

I would be more concerned if he was doing less testing than more but

you should be able to discuss your feelings with him without feeling

like you have one foot out the door.

As for the BMB's, once again, he might have a clinical reason that is

guiding his decision. Perhaps your friend has less stable disease

than you do which requires more monitoring but once again, if you

would prefer to have the biopsy, he should be willing to perform it

or at least reassure you that you don't need it at this time.

My advice is tell him how you feel in casual conversation, don't tell

him what you think he should be doing but tell him what you would

like him to do. If he agrees, great, if not, you don't have to leave

him, you'll just have to decide if you are comfortable enough with

him to continue having him.

Take care,

Tracey

>

> 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

>

August 16, 2008

I am with Tracey and Zavie on this one. I have had two

oncologist/hematologists, one a CML speciaists ( my current one) and one

not. Both of them tell me to bring what ever I find on the 'information

highway' with me when I come. They are not intimidated by the

information, in fact grateful for it as their time is limited. Both

have followed the diagnosis/treatment protocol suggested by the NCCN and

novartis. And when I made suggestions or raised concern, their response

was " what ever the patient decides her needs are " . If I asked for

something that was not the protocol, they would investigate it and give

me reasons for or against the request ( like dropping dosage). I was

tested often with CBCs, CMPs and BMBs and BMAs but now, having had PCRU

for 6 years, am up to CBCs and CMPs every 12 weeks, and PCR every 6

months. I completely trust my onc and NP who are my health care team. I

wish as much for you.

Best of luck my young friend, with your decision. YOU have to feel

comfortable just like your husband said.

Love

Barb

ups.com, " Tracey " <traceyincanada@...> wrote:

>

> Hi ,

>

> Have you ever asked the local doc why he does more frequent testing

> than what is considered " the norm " ? Perhaps he has a clinical reason

> for this. If he has no reason, then you could always let him know

> that you would prefer to have the more common schedule of testing

> without sounding confrontational. Just because you express your

> opinion doesn't mean that you have to dump him if he doesn't agree

> with it.

>

> I would be more concerned if he was doing less testing than more but

> you should be able to discuss your feelings with him without feeling

> like you have one foot out the door.

>

> As for the BMB's, once again, he might have a clinical reason that is

> guiding his decision. Perhaps your friend has less stable disease

> than you do which requires more monitoring but once again, if you

> would prefer to have the biopsy, he should be willing to perform it

> or at least reassure you that you don't need it at this time.

>

> My advice is tell him how you feel in casual conversation, don't tell

> him what you think he should be doing but tell him what you would

> like him to do. If he agrees, great, if not, you don't have to leave

> him, you'll just have to decide if you are comfortable enough with

> him to continue having him.

>

> Take care,

> Tracey

>

> >

> > 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

> >

>

August 16, 2008

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