RE:putting blind faith in your doctor -

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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