Re: putting blind faith in your doctor -

[Guest guest]

Hello and thankyou for your reply,

Im sorry if you felt that i was attacking you personally in my post.

In no way was that my intention but i do believe you need to go back

to the original post and read what was written,this is a quote from

one of the post (CML is very rare and Gleevec is a state of the art

drug that works very differently than any other drug on the market.

The majority of hematologists/oncologists have maybe one or two CML

patients in their practice, if even that many. Do you think they

spend hours and hours researching this disease, travelling to

conferences and consulting with experts when less than 1% of their

clientel is affected? )(My Doctor Tim specilizes in all this

and goes international for many confernces and im sure he isnt the

only one) All in all the point i just wish to make is, yes we all

have lots of things that we can post and lots of advice we can give

but lets be open and be prepared for a reply. When one does reply it

dosnt mean we are wrong it just means we might not know all the

facts. Even though Ive had no other comment other than zavie and

you, ive had lots of comments via .chat and they've all been

words of encouragement. I wasnt directing everyting at you or

tracey, I just used it as a example that we need to becareful what

we post and the type of message we are putting across. If you read

alot of the post there are many " words of encouragement " but also

lots of advice. And that is where i also mentioned we need to

becareful. Example, Ive put a post in before about health care in

australia verses health care in other countries, and the negative

post i got back, they didnt have all the facts. saying our country

takes Gleevec away from us if we reach a certian % philly (which is

not true, as my doctor Tim confirmed with me)

Thankyou for your story and im glad you went with your gut feeling

and didnt have a transplant...

Susie Leech

Dx Nov 2002

[Guest guest]

Hi Susie,

I just wanted to say that I stand by what I said in that the

majority of doctors are not experienced with CML and Gleevec. Of

course I wasn't referring to YOUR doctor because, as you've pointed

out, he is one of the ones who IS experienced. I was talking about

the MAJORITY of doctors.

How many CML experts do you suppose there are in the world today?

Perhaps a dozen or even two dozen? Now how many doctors do you

suppose there are in the world today? Several thousand no doubt.

THIS was my point.

I'm glad that you have an experienced doctor but the point I was

trying to make is that MOST doctors are NOT experts. In fact, many

doctors will go through their entire careers having never seen a CML

patient. My own family doctor who diagnosed me, had never diagnosed

a CML patient before me. Remember, CML only strikes 1 in a 100,000

people (hardly a common disease).

The bottom line is that for the majority of us who do not have a

doctor who is a CML expert, we need to be informed enough to know if

our doctor is informed enough. And if we aren't comfortable with

the level of experience our doctor has, we shouldn't hesitate to

find another one.

This whole thread started because someone said they had complete

faith in their doctor for no other reason than because he was a

doctor. My point was that just because someone is a doctor, doesn't

mean that he/she knows much about CML or Gleevec. I never referred

to YOUR doctor but it seems that you took my post personally which

of course, wasn't my intention. You don't need to defend your

doctor either, we all know that he's one of the experts but just

because you are lucky enough to have an expert for a doctor, don't

assume that the rest of the world is as lucky. These are the people

I was directing my post at, not you.

Take care,

Tracey

[Guest guest]

Thank You Susie :-)

It is so good to read your comments, both this one and the other note you

posted. As you know, I have sent you messages through MSN and but of

course other people don't read these. You speak my mind exactly!!! I am very

new to this group, but it would be nice to feel that both oldies AND newbies can

voice their views without feeling intimidated. I might be new to CML but I am

by no means new to the health care system!! I know how things work in America

but do Americans truly know how the health care system works over here?

Jackie

[ ] Re: putting blind faith in your doctor -

Hello and thankyou for your reply,

Im sorry if you felt that i was attacking you personally in my post.

In no way was that my intention but i do believe you need to go back

to the original post and read what was written,this is a quote from

one of the post (CML is very rare and Gleevec is a state of the art

drug that works very differently than any other drug on the market.

The majority of hematologists/oncologists have maybe one or two CML

patients in their practice, if even that many. Do you think they

spend hours and hours researching this disease, travelling to

conferences and consulting with experts when less than 1% of their

clientel is affected? )(My Doctor Tim specilizes in all this

and goes international for many confernces and im sure he isnt the

only one) All in all the point i just wish to make is, yes we all

have lots of things that we can post and lots of advice we can give

but lets be open and be prepared for a reply. When one does reply it

dosnt mean we are wrong it just means we might not know all the

facts. Even though Ive had no other comment other than zavie and

you, ive had lots of comments via .chat and they've all been

words of encouragement. I wasnt directing everyting at you or

tracey, I just used it as a example that we need to becareful what

we post and the type of message we are putting across. If you read

alot of the post there are many " words of encouragement " but also

lots of advice. And that is where i also mentioned we need to

becareful. Example, Ive put a post in before about health care in

australia verses health care in other countries, and the negative

post i got back, they didnt have all the facts. saying our country

takes Gleevec away from us if we reach a certian % philly (which is

not true, as my doctor Tim confirmed with me)

Thankyou for your story and im glad you went with your gut feeling

and didnt have a transplant...

Susie Leech

Dx Nov 2002

[Guest guest]

Thank You Susie :-)

It is so good to read your comments, both this one and the other note you

posted. As you know, I have sent you messages through MSN and but of

course other people don't read these. You speak my mind exactly!!! I am very

new to this group, but it would be nice to feel that both oldies AND newbies can

voice their views without feeling intimidated. I might be new to CML but I am

by no means new to the health care system!! I know how things work in America

but do Americans truly know how the health care system works over here?

Jackie

[ ] Re: putting blind faith in your doctor -

Hello and thankyou for your reply,

Im sorry if you felt that i was attacking you personally in my post.

In no way was that my intention but i do believe you need to go back

to the original post and read what was written,this is a quote from

one of the post (CML is very rare and Gleevec is a state of the art

drug that works very differently than any other drug on the market.

The majority of hematologists/oncologists have maybe one or two CML

patients in their practice, if even that many. Do you think they

spend hours and hours researching this disease, travelling to

conferences and consulting with experts when less than 1% of their

clientel is affected? )(My Doctor Tim specilizes in all this

and goes international for many confernces and im sure he isnt the

only one) All in all the point i just wish to make is, yes we all

have lots of things that we can post and lots of advice we can give

but lets be open and be prepared for a reply. When one does reply it

dosnt mean we are wrong it just means we might not know all the

facts. Even though Ive had no other comment other than zavie and

you, ive had lots of comments via .chat and they've all been

words of encouragement. I wasnt directing everyting at you or

tracey, I just used it as a example that we need to becareful what

we post and the type of message we are putting across. If you read

alot of the post there are many " words of encouragement " but also

lots of advice. And that is where i also mentioned we need to

becareful. Example, Ive put a post in before about health care in

australia verses health care in other countries, and the negative

post i got back, they didnt have all the facts. saying our country

takes Gleevec away from us if we reach a certian % philly (which is

not true, as my doctor Tim confirmed with me)

Thankyou for your story and im glad you went with your gut feeling

and didnt have a transplant...

Susie Leech

Dx Nov 2002

[Guest guest]

Thanks for your reply Tracey,

ok well i agree about GP's not knowing much about cml, I was actually

refering to a Oncologist. And yes maybe in the states they dont see to

many. But here in Australia with a ratio of people our cml rate is

much higher. Personally I live in a town with only 9 - 10,000 people,

just leukeamia alone there has been 6 new cases diagnosed just this

year, and thats just the ones I know of. Scarey isnt it. But I think

Zavie and i worked it out by our AUSTRALIAN stastics that we have a

higher rate of cml. And you say how this has started by you answering

one post, well my reply wasnt just replying to one post it was to

many..and not just yours..

susie leech

dx nov 2002

[Guest guest]

Date: Sat, 11 Feb 2006 15:52:51 +1100 (EST)

From: willis <cawillis9@...>

Subject: Re: [ ] Re: putting blind faith in your doctor -

no_reply

I joined this group a week or so ago thinking I might be able to help a friend

of mine with Cml2, get ideas of how i might help etc......

But to be honist I think there is a huge difrence in peoples opinions re

diffrent countries and everyone thinks there systems are the same re Health

care, .... there not and never will be if you think of it, We can actually all

learn from each other wether we live in antarctica, America, Australia or where

ever.....

I thought we were all on here to voice ones opinons, but I hate to say I am not

so sure of that, this is how I feel thru your emails!! have I got this wrong

......I am sure some of you will let rip at me just take head first tho, as I am

actually suffering from cancer myself and have been thru hell, but I wasnt

prepared to stop at me if I could help my friend ....

Please be more accepting to difrent countries, people, cultures , ways,

ilnesses,etc as not everyone in the world is out there to attack, I looked at

this as a help group but arent finding it to be that way.

Chris

[ ] Re: putting blind faith in your doctor -

Hello and thankyou for your reply,

Im sorry if you felt that i was attacking you personally in my post.

In no way was that my intention but i do believe you need to go back

to the original post and read what was written,this is a quote from

one of the post (CML is very rare and Gleevec is a state of the art

drug that works very differently than any other drug on the market.

The majority of hematologists/oncologists have maybe one or two CML

patients in their practice, if even that many. Do you think they

spend hours and hours researching this disease, travelling to

conferences and consulting with experts when less than 1% of their

clientel is affected? )(My Doctor Tim specilizes in all this

and goes international for many confernces and im sure he isnt the

only one) All in all the point i just wish to make is, yes we all

have lots of things that we can post and lots of advice we can give

but lets be open and be prepared for a reply. When one does reply it

dosnt mean we are wrong it just means we might not know all the

facts. Even though Ive had no other comment other than zavie and

you, ive had lots of comments via .chat and they've all been

words of encouragement. I wasnt directing everyting at you or

tracey, I just used it as a example that we need to becareful what

we post and the type of message we are putting across. If you read

alot of the post there are many " words of encouragement " but also

lots of advice. And that is where i also mentioned we need to

becareful. Example, Ive put a post in before about health care in

australia verses health care in other countries, and the negative

post i got back, they didnt have all the facts. saying our country

takes Gleevec away from us if we reach a certian % philly (which is

not true, as my doctor Tim confirmed with me)

Thankyou for your story and im glad you went with your gut feeling

and didnt have a transplant...

Susie Leech

Dx Nov 2002

[Guest guest]

Date: Sat, 11 Feb 2006 15:52:51 +1100 (EST)

From: willis <cawillis9@...>

Subject: Re: [ ] Re: putting blind faith in your doctor -

no_reply

I joined this group a week or so ago thinking I might be able to help a friend

of mine with Cml2, get ideas of how i might help etc......

But to be honist I think there is a huge difrence in peoples opinions re

diffrent countries and everyone thinks there systems are the same re Health

care, .... there not and never will be if you think of it, We can actually all

learn from each other wether we live in antarctica, America, Australia or where

ever.....

I thought we were all on here to voice ones opinons, but I hate to say I am not

so sure of that, this is how I feel thru your emails!! have I got this wrong

......I am sure some of you will let rip at me just take head first tho, as I am

actually suffering from cancer myself and have been thru hell, but I wasnt

prepared to stop at me if I could help my friend ....

Please be more accepting to difrent countries, people, cultures , ways,

ilnesses,etc as not everyone in the world is out there to attack, I looked at

this as a help group but arent finding it to be that way.

Chris

[ ] Re: putting blind faith in your doctor -

Hello and thankyou for your reply,

Im sorry if you felt that i was attacking you personally in my post.

In no way was that my intention but i do believe you need to go back

to the original post and read what was written,this is a quote from

one of the post (CML is very rare and Gleevec is a state of the art

drug that works very differently than any other drug on the market.

The majority of hematologists/oncologists have maybe one or two CML

patients in their practice, if even that many. Do you think they

spend hours and hours researching this disease, travelling to

conferences and consulting with experts when less than 1% of their

clientel is affected? )(My Doctor Tim specilizes in all this

and goes international for many confernces and im sure he isnt the

only one) All in all the point i just wish to make is, yes we all

have lots of things that we can post and lots of advice we can give

but lets be open and be prepared for a reply. When one does reply it

dosnt mean we are wrong it just means we might not know all the

facts. Even though Ive had no other comment other than zavie and

you, ive had lots of comments via .chat and they've all been

words of encouragement. I wasnt directing everyting at you or

tracey, I just used it as a example that we need to becareful what

we post and the type of message we are putting across. If you read

alot of the post there are many " words of encouragement " but also

lots of advice. And that is where i also mentioned we need to

becareful. Example, Ive put a post in before about health care in

australia verses health care in other countries, and the negative

post i got back, they didnt have all the facts. saying our country

takes Gleevec away from us if we reach a certian % philly (which is

not true, as my doctor Tim confirmed with me)

Thankyou for your story and im glad you went with your gut feeling

and didnt have a transplant...

Susie Leech

Dx Nov 2002

[Guest guest]

Hi

I have to admit that I'm totally confused as to what you are

referring to. Where did you read that people cannot voice their

opinions here or are attacking other countries? It seems to me that

if anyone is bothered by someone else's opinion, it's you. Why do

you feel that we don't have any more right to voice our opinions

than you do?

No one said that health care systems are the same every where in the

world and I don't see how this topic even came up. The topic that I

was talking about was about how CML is not a " run of the mill "

cancer and is treated very differently than most cancers. This is

why it's very important to have a doctor who is familiar with CML or

at least to have a base knowledge yourself to know what issues to

discuss with your doctor.

If you are confident in your doctor's ability then all the power to

you. This is what I was talking about. No where did I intend to

attack anyone's doctor or decision to stay with any particular

doctor but rather to inform people that not all doctors are created

equal when it comes to CML. If someone isn't fully confident in

their doctor, they shouldn't feel bad about finding a new one. I'm

baffled as to how you are finding this so offensive.

As I said in my first post, we've seen no shortage of people who

were treated very questionably over the years and these people were

from many different countries. Some of these people knew they

needed a new doctor but didn't know how to find one. Do you suggest

that we should encourage people to stay with their doctors no matter

if they are incompetent? I would like to see people empowered

enough to take control of their lives and their care, if you find

that offensive, I'm sorry.

Tracey

>

> Date: Sat, 11 Feb 2006 15:52:51 +1100 (EST)

> From: willis <cawillis9@...>

> Subject: Re: [ ] Re: putting blind faith in your doctor -

> no_reply

>

>

> I joined this group a week or so ago thinking I might be able to

help a friend of mine with Cml2, get ideas of how i might help

etc......

>

> But to be honist I think there is a huge difrence in peoples

opinions re diffrent countries and everyone thinks there systems are

the same re Health care, .... there not and never will be if you

think of it, We can actually all learn from each other wether we

live in antarctica, America, Australia or where ever.....

>

> I thought we were all on here to voice ones opinons, but I hate to

say I am not so sure of that, this is how I feel thru your emails!!

have I got this wrong .....I am sure some of you will let rip at me

just take head first tho, as I am actually suffering from cancer

myself and have been thru hell, but I wasnt prepared to stop at me

if I could help my friend ....

>

> Please be more accepting to difrent countries, people, cultures ,

ways, ilnesses,etc as not everyone in the world is out there to

attack, I looked at this as a help group but arent finding it to be

that way.

>

> Chris

>

> [ ] Re: putting blind faith in your doctor -

>

>

> Hello and thankyou for your reply,

> Im sorry if you felt that i was attacking you personally in my

post.

> In no way was that my intention but i do believe you need to

go back

> to the original post and read what was written,this is a quote

from

> one of the post (CML is very rare and Gleevec is a state of

the art

> drug that works very differently than any other drug on the

market.

> The majority of hematologists/oncologists have maybe one or

two CML

> patients in their practice, if even that many. Do you think

they

> spend hours and hours researching this disease, travelling to

> conferences and consulting with experts when less than 1% of

their

> clientel is affected? )(My Doctor Tim specilizes in all

this

> and goes international for many confernces and im sure he isnt

the

> only one) All in all the point i just wish to make is, yes we

all

> have lots of things that we can post and lots of advice we can

give

> but lets be open and be prepared for a reply. When one does

reply it

> dosnt mean we are wrong it just means we might not know all

the

> facts. Even though Ive had no other comment other than zavie

and

> you, ive had lots of comments via .chat and they've all

been

> words of encouragement. I wasnt directing everyting at you or

> tracey, I just used it as a example that we need to becareful

what

> we post and the type of message we are putting across. If you

read

> alot of the post there are many " words of encouragement " but

also

> lots of advice. And that is where i also mentioned we need to

> becareful. Example, Ive put a post in before about health care

in

> australia verses health care in other countries, and the

negative

> post i got back, they didnt have all the facts. saying our

country

> takes Gleevec away from us if we reach a certian % philly

(which is

> not true, as my doctor Tim confirmed with me)

>

> Thankyou for your story and im glad you went with your gut

feeling

> and didnt have a transplant...

>

> Susie Leech

> Dx Nov 2002

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Susie,

It seems that the area where you live has a much higher rate of CML

than other areas but I don't see how this has anything to do with

the number of doctors who are familiar with CML.

Oncologists deal with all types of cancers, breast cancers, prostate

cancers, lung cancers etc. As I've said before (I feel like a

broken record now), CML is very very different from these other

cancers. CML is also very different from the other leukemias and

lymphomas. This was my only point.

I'm very glad that you have a CML expert but again, the vast

majority of us do not and the vast majority of oncologists do not

have much experience with CML. This is not something I'm making up

out of thin air. An oncologist who sees a couple of CML patients in

their career, in comparison to the thousands of breast cancer

patients and prostate cancer patients they see, is not a CML

expert.

I don't understand why people are finding this bothersome. Judging

by your reaction and Jackie's, you'd think that I was attacking you

personally when I say that most doctors are not CML experts. I

don't understand why you find this offensive but I'm sorry that you

do. My intention is to help educate people so that they are

empowered to look after themselves, that's it.

Tracey

>

> Thanks for your reply Tracey,

> ok well i agree about GP's not knowing much about cml, I was

actually

> refering to a Oncologist. And yes maybe in the states they dont

see to

> many. But here in Australia with a ratio of people our cml rate is

> much higher. Personally I live in a town with only 9 - 10,000

people,

> just leukeamia alone there has been 6 new cases diagnosed just

this

> year, and thats just the ones I know of. Scarey isnt it. But I

think

> Zavie and i worked it out by our AUSTRALIAN stastics that we have

a

> higher rate of cml. And you say how this has started by you

answering

> one post, well my reply wasnt just replying to one post it was to

> many..and not just yours..

>

> susie leech

> dx nov 2002

>

[Guest guest]

Thankyou for your post and also for seeing my heart and intention

of my post.

Yes the post I did on Health Care was just questions as I have no

intention in Attacking USA. I love America, Ive been there twice, my

daughter has been there three times and has worked there and ive got

some wonderful friends that we now classify as family over there..as

well as I am planing a trip over there in the next few years...

all i can say is " God Bless America "

Susie Leech

Dx Nov 2002

Currently off Gleevec

>