RE:putting blind faith in your doctor -Tracey/

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>

> Message: 12

> Date: Fri, 03 Feb 2006 17:20:19 -0000

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

> Subject: putting blind faith in your doctor-Jackie

>

> I just want to mention that there have been a number of patients

who

> we've seen come through these support groups over the years who

have

> been given seriously flawed advice from so called professionals

> (their doctors). By putting your blind faith in your doctor, you

> are potentially risking your life and I think people should know

the

> reality of this and the risks.

>

> Jackie, you may have a very competent doctor, and I hope you do,

but

> there have been no shortage of horror stories we've seen here

about

> doctors who didn't know what they were doing.

>

> We've seen patients declared to be cured and taken off all

> medication with no testing done only to have their CML come back

> with a vengeance and resistant to treatment. We've seen people

told

> that they were on their death bed and should get their affairs in

> order when in fact they were in a deep remission. We've seen

people

> sent off to transplant for no good reason and we've seen people

> denied transplants who really needed them. We've seen patients

> given medication that interacted negatively with Gleevec putting

> them at risk and we've seen patients given the wrong tests or no

> tests at all while being monitored by so called professionals.

> We've seen plenty of tests being interpreted wrong by their

doctors

> and we've seen serious life threatening mistakes made by doctors.

I

> think we've pretty much seen or heard it all over the years with

the

> hundreds (probably closer to thousands) of people we've seen come

> and go.

>

> 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?

>

> We are not doctors ourselves (with the exception of one very

valued

> member who is), but some of us have been reading medical journals

> for years and seeking out the opinions and advice of the true CML

> experts so I wouldn't be so quick to discount anything we say just

> because we aren't doctors. The truth is, some of us do know more

> than the average, run of the mill, hematologist/oncologist. This

> may sound arrogant but when you hear some of the horror stories

that

> have happened to people here (and not just in America but all over

> the world, in many different countries), you'll see just how

> important it is to understand your disease and the implications of

> putting blind trust in a doctor. Knowledge is power. This is

your

> life that's on the line so it's not a time to be complacent.

>

> People in this group (such as Zavie), have educated and informed

> others so that they were able to understand that they were getting

> inferior care from their doctors. As a result, they found new

> doctors who were more knowledgeable and they were able to get

better

> care. This is the message I want to stress. In fact there are

many

> of us who have changed doctors over the course of our treatment

> and/or sought the advice of CML expert.

>

> I'm not saying listen to us, we know everything. I'm saying talk

to

> your doctor about the issues we talk about here and after

discussing

> various issues with him/her, you'll either feel comfortable with

> his/her level of experience or you won't. If you aren't

comfortable

> with your doctor, then get a new one. I have seen too many people

> get sick (and worse) by putting blind faith in a doctor who didn't

> know what he/she was doing. Just because someone is a doctor, it

> doesn't make them a CML expert or even competent to treat a CML

> patient.

>

> I'm not saying this to scare anyone but to encourage people to

think

> for themselves and take control of their lives by not blinding

> trusting someone else to make life and death decisions for them.

> Your relationship with your doctor should be a partnership, not a

> dictatorship.

>

> Tracey

>

>

>

>

> I was dx'd in 5- 2000 and I have been a member of our support

group since

> day 1! I believe in my heart that had I not found this group or

whatever

> group we were previously part of that I would not be here today. I

can tell

> you that every word Tracey is saying here is true!

> For those of you that sincerely believe that you can put your life

in the

> hands of the professionals without participating in your own

treatment plan

> and making choices for yourself, I urge you to please stay in this

group and

> learn more. Read more of other peoples post and their dilemmas and

or

> celebrations and you will know more about yourself.

> ly' I think that many of us including myself, have become

quite a

> knowledgeable in the medical field.

> Oh and my Oncologist always refers to me as his partner! Is it the

same for

> him and all of his patients? No. But he wishes it were because he

believes

> then he could save more lives.

> Knowledge is power!!!

>

>

>

> ez

Hi Tracey and ..

I to believe in this group, Zavie has been a tower of strenght to me

through my trials with gleevec. But i do beg to differ in your

comment when saying about our doctors spending their time seeing cml

patients and going to comferences as well as how many cml patients

they have. I see Tim as many people know, he sees far more

than 1 or 2 patients and yes he does go to many conferences and

specialises in cml. Im sure that he isnt the only Oncolagist that

does this. I think we need to becauful in knocking other doctors as

they are the ones that go to the uni for many years and yes they can

be wrong and that is why we have this group so we can and share our

differences. As far as you saying tracey about being told to get

life in order...well thats the very first thing Tim told me yet you

all think him as a wonderful Oncologist. So some doctors may feel

that way and its not up to us to make judement on the way they treat

their patients we just have to be here for them when they want to

talk about it. I too get concerned how some people go on this

message board, you would think that they were the Oncologist. I

think we need to be careful in answering and giving advice sometimes

the way we answer comes across very harsh and with a closed mind..

My motto is if i place a question and i get a answer from zavie or

who ever i go with the flow and if it feels good i take it on if not

then i ditch it. And as much as I think zavie is great and has been

my strength and his heart is to be there and help many others ... he

knows that there has been some advice he has given me which ive not

agreed with, we just talk it through. I think its a free world and

we are all entitled to our say but its up to us as individuals how

we receive it.

Im not in this reply going against zavie (hes my mate) but there has

been many post from other people that replied to me that ive not

agreed and their answers come across as there way is the only way...

Susie Leech

Dx Nov 2002

>