CML Diagnosis

[Guest guest]

Dear Esther,

I think there are different schools of thought on how long you have had CML

from the time you were diagnosed. Some say 6 months, and some less. I started

noticing petchaie (little red dots) on my sin for a few months, and the head

sweats. That wasn't enough for me to run to the doctor, as I didn't feel any

different. I was in ER for GERD and from there I was diagnosed when I went for

a follow up with my doctor. You are right about poor bedside manners, I had the

worst encounter with a doctor I ever had with one who did my first BMB. I

thought he was going to kill me and he blamed me for having too much fat in the

area, but the real reason was he was too inexperienced. It's like a bad lawyer

who doesn't really have a case, who always blames the victim.

We just have to stand up to these doctors and the way to do it is bring in

something in writing to back you up, something from a journal or a medical

reporter. It's good to keep a record of all those CBC's. I had a small journal

where I kept all the information and I found out my doctor was lying to me, too.

My counts were crashing and they told me I was doing well. I make sure I get a

copy of everything. I wanted my hospital records and they said they would have

to charge me $1 a page. My cardiologist went online and made copies and gave

them to me. That's what I consider a good bedside manner. Bring a little

notebook and write down what you think you might forget and ask them how to

spell it. I am not a bit bashful to ask for my needs, not anymore.

I found something useful for newbies and you might find it useful, too. As

you said, we can't retain everything, so it's good to have something in writing

we can refer to. Keep your guard up, Esther.

http://cml.leukemia-lymphoma.org/CMLApp/Controller?action=loadContent & itemid=191\

240 & ln=2#approach

http://www.leukemia-lymphoma.org/all_mat_toc.adp?item_id=2119 & cat_id=1209

You can also be informed of the CML teleconferences and register to listen in.

http://cml.leukemia-lymphoma.org/CMLApp/Controller?action=loadContent & itemid=191\

248 & ln=7

Keep your guard up, Esther,

Lottie

[Guest guest]

Lottie, thanks for all this information

In , " Lottie Duthu " <lotajam@...> wrote:

>

> Dear Esther,

> I think there are different schools of thought on how long you

have had CML from the time you were diagnosed. Some say 6 months,

and some less. I started noticing petchaie (little red dots) on my

sin for a few months, and the head sweats. That wasn't enough for me

to run to the doctor, as I didn't feel any different. I was in ER

for GERD and from there I was diagnosed when I went for a follow up

with my doctor. You are right about poor bedside manners, I had the

worst encounter with a doctor I ever had with one who did my first

BMB. I thought he was going to kill me and he blamed me for having

too much fat in the area, but the real reason was he was too

inexperienced. It's like a bad lawyer who doesn't really have a

case, who always blames the victim.

> We just have to stand up to these doctors and the way to do it

is bring in something in writing to back you up, something from a

journal or a medical reporter. It's good to keep a record of all

those CBC's. I had a small journal where I kept all the information

and I found out my doctor was lying to me, too. My counts were

crashing and they told me I was doing well. I make sure I get a copy

of everything. I wanted my hospital records and they said they would

have to charge me $1 a page. My cardiologist went online and made

copies and gave them to me. That's what I consider a good bedside

manner. Bring a little notebook and write down what you think you

might forget and ask them how to spell it. I am not a bit bashful to

ask for my needs, not anymore.

> I found something useful for newbies and you might find it

useful, too. As you said, we can't retain everything, so it's good

to have something in writing we can refer to. Keep your guard up,

Esther.

> http://cml.leukemia-lymphoma.org/CMLApp/Controller?

action=loadContent & itemid=191240 & ln=2#approach

> http://www.leukemia-lymphoma.org/all_mat_toc.adp?

item_id=2119 & cat_id=1209

> You can also be informed of the CML teleconferences and register to

listen in.

> http://cml.leukemia-lymphoma.org/CMLApp/Controller?

action=loadContent & itemid=191248 & ln=7

> Keep your guard up, Esther,

> Lottie

>

>