RE: putting blind faith in your doctor -Tracey/

[Guest guest]

Hello Susie,

If for any reason you perceived anything that I said in my post as too harsh

or close minded, I sincerely apologize because that was not my intention.

In fact I am very open minded... open minded enough to trust and believe in

this support group for many things including just needing someone to listen.

Zavie as you mentioned are one of those people who does have a lot of

knowledge and has provided a lot of support and I am almost positive that

the place he obtained all of this was from being on this support group and

being a cml'er himself.

I personally don't recall saying anything about the doctors attending

conferences all though I am glad to say that he does go to almost everyone

of them. And never misses the ASH.

I think that what Tracey and I were merely trying to say is that sometimes

Dr's don't know everything. You said so yourself:)

And I don't mean that in a bad way.

An example of what I mean is this:

This group which is made up of primarily people with CML and we chat about

different side affects etc. We notice the common thread and then share it

with our Doctors and then they are aware that a particular side affect is

common or not common and possibly even what to do about it providing someone

has shared how their doctor treated the symptom or how they as an individual

may have treated the symptom.

We were also trying to address the fact that people need to work as a team

with their doctors as oppose to just do whatever they say.

From personal experience I can tell you that in 2000 I met with a doctor who

was the head of the BMT unit in a major center.

Keep in mind a lot of Dr's were still very skeptical as my own oncologist

was about Gleevec (it was only in trial for about 2 years then)

Anyway, I had 4 consults and was almost done being prepped for a BMT but all

the while communicating with people who were in the trial and doing so very

good.

I took a recorder with me to every consult so that I could absorb more of

the things I needed to know or think of questions after that I would like to

have asked. Four 2 hour consults with a doctor who was head of a BMT unit

and who was pushing me very hard to go for BMT and at last I saved a simple

trick question for her... Do you know if I am 100% PH positive or not? I

knew the answer but she said she didn't know.

At that point I knew there was no way possible my life or my treatment would

be left in her hands. My darn file was right there in her hands.

She could have pretended to know the answer by looking at it!

After that I told my oncologist to forget about it and I would stay on

interferon and ARC until Gleevec was available. He didn't agree at that time

but when I asked him last year March 2004 if he would have made the same

choices that I did he replied with I can't tell you a matter fact answer

because it wasn't me it was you that was in the position and one never knows

how they will react or what they will do but I can tell you that hindsight

Knowing what I know now and seeing such good results with Gleevec I would

have hoped that I had made the same choice that you did.

He also never fails to tell me how grateful he is that I stay involved and

learn as much as I do here on this support group.

I use to be his only CML patient and since my dx in 2000 he now has 13!

He is no CML expert and I don't think one has to be... I just think a good

doctor needs to be open to change and not living in the old fashioned world

of I know everything and you will do what I say because I am right since I

am the doctor.

A few years ago for a doctor to work with an empowered patient was very

difficult, today it's a wonderful thing.

Also, I have never actually seen anyone telling someone what to do on this

list or pretending to be an Oncologist, but rather giving the best advice

they have to offer which is what most people are looking for when they share

their experiences and thoughts.

I have always seen people like Tracey, Zavie, and Cheryl to name

just a few; advise one to see their doctor immediately whenever someone was

having a problem that required medical attention.

Again all that we read here is going to be about our own perception and we

all have the choice as you said to take it or leave it.

Also Susie I truly believe that anytime anyone takes the time to post to one

directly is because they genuinely care.

Hopefully you feel that too:)

ez

From: " Zavie miller " <zmiller@...>

Subject: RE: RE:putting blind faith in your doctor -Tracey/

Hi Susie,

Thank you for your kind words. I pray that you will make it into the

trial.

Zavie

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

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