(No subject)

[Guest guest]

Dear Suzzie,

I am so sorry about your friend's mother. This is a perfect example of why

all patients need to be pro-active. If I had gone along with my 3rd choice of

doctors, I don't think I would still be here. To have survived all of the

really horrific super bug infections is another testament to finding the best

doctors and keeping them in touch with your problems, and not giving someone

have sole jurisdiction over your treatment without your input.

Tracey is right, doctors should not try to practice outside their own specialty.

There are agencies that provide free transportation for you to fly to another

destination to see an expert if you don't have one near by, and if you contact

the social worker at that research center or hospital, they can advise you the

best and least expensive to stay. Many are free or low costs. Please listen to

the voice of reason and try to keep up with all the latest information on new

drugs and the doctors who were hand picked to conduct these trials, because of

their expertise.

Some doctors will answer you if you write them. The first one who comes to mind

is Dr. Druker at OSHU and his nurse Carolyn Blasdel. There is no one on the

face of this earth who knows more about Gleevec, since he developed it, ergo he

would have superior knowledge about CML. This is a great opportunity to get

expert advice, free on the internet. His advice doesn't have to be restricted

to Gleevec only.

You may have to have a consultation only once with a CML specialist, and if

your local oncologist will cooperate and follow the protocol, you will have a

better chance of getting to remission. It is an absolute absuridy for a doctor

to play God and be lackadasial about your treatment. We post our personal

experiences here every day and if we have a computer, we should have access to a

printer to keep files on this information to show your doctor what the latest

treatments and trials are and what you know about it. There is no law that says

we have to keep the same doctor ad infinitum.

Your post comes right on the heels of another post by a fellow member who was

given less than stellar infomation about her disease and her longevity. Perhaps

someone else who lives in Canada could give us their opinion about where our

member can go for their treatment if they, or know someone who lives in the same

area. Everyone deserves better and we shouldn't take less.

I'm glad you posted this, Suzzie because it gave me the opportunity to vocalize

on a subject that is very close to my heart, that we become advocates for

ourselves, but you need the evidence to back up what you are trying to

articulate to the doctor. I want to emphasize that I am not where I want to be,

but at least I am not where I was. I was a victim to this chicanery, just as

many others were. It would be beneficial to you, were you to bring another

person in the office with you, to record what the doctor is saying, either in

writing or on tape. If you use the latter, be sure you tell the doctor that you

will be recording what he says so that you don't miss out on anything that is

pertinent to your care. In most states it is illegal to record something

without the person's knowledge. If he is certain of that he is saying, it

should be no problem for him.

In the meantime, take care and gain knowledge,

Lottie