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[Guest guest]

Dear Esther,

It may appear that I know a lot, but I really don't know much more than the

average person on this list. There are several that know becoup more than I can

cram in my chemo brain. I'm happy that several in the group find these posts

useful enough to bring the information to their doctors. I went for so many

years not knowing anything because my doctor didn't tell me anything and it took

years to learn that I had to do my own research and be my own advocate if I was

to be able to find out the latest news and where the trials were, so I'm happy

to share with anyone who is interested. I just remember what it was like for me

for the first few years. I hate to see anyone in the dark about CML. Now they

think I am outspoken. When you don't know anything, you don't know what

questions to ask.

I had a big falling out with my local oncologist, not in words so much, but

in being ignored after I went to MDACC. If I had not followed my instincts, I

wouldn't be here, I am convinced of that, because no other patient in that

office with CML has survived as long as I have. Now he calls me his miracle

patient. Baloney, he had nothing to do with it. He's Irish, so maybe he kissed

the blarney stone. LOL (I did, can't you tell?)

For the longest time, I was treated as a second class citizen. My

goodness, if you have cancer and the people in the office are lucky enough to

have a nice job, why in the world would they want to treat people so shabbily?

I would be glad to trade places with them if it was possible. I came for my CBC

one day and the lights were turned off. I asked if they had paid their electric

bill and they said it was because the receptionist had a migrane. I think they

finally figured out that she was ignoring the patients and kept her back turned

so you couldn't get her attention. They finally got rid of her. Well one down

and one more to go and when she is gone, I will throw myself a party. LOL.

All good wishes,

Lottie

[Guest guest]

-Lottie, I'm not to thrilled with my onc.either he never tells me

anything except i'm doing fine when i start asking him alot of

questions He tells me why don't i get another opinion which i

eventually will. If it wasn't for this group i wouldn't have known

anything.I've asked other docs about him and they say he's a good doc

just has a terrible bedside manner,but he does do a good bmb.In less

than 2 weeks i will be going back for my 3 month appointment{starting

to get nervous]I get like that evertime i go there.I am also learning

slowly cause i can't retain anything in this brain,i got dx 19 months

ago. How long do you think you actually have the cml before you get

dx? I felt horrible for years before i got dx.My gp would always

take all kinds of blood work and nothing would ever show up, but at

that time i wasn't asking to see my blood results. Now i look at

everything.

thanks again for sharing

Esther

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

>

> Dear Esther,

> It may appear that I know a lot, but I really don't know much

more than the average person on this list. There are several that

know becoup more than I can cram in my chemo brain. I'm happy that

several in the group find these posts useful enough to bring the

information to their doctors. I went for so many years not knowing

anything because my doctor didn't tell me anything and it took years

to learn that I had to do my own research and be my own advocate if

I was to be able to find out the latest news and where the trials

were, so I'm happy to share with anyone who is interested. I just

remember what it was like for me for the first few years. I hate to

see anyone in the dark about CML. Now they think I am outspoken.

When you don't know anything, you don't know what questions to ask.

> I had a big falling out with my local oncologist, not in words

so much, but in being ignored after I went to MDACC. If I had not

followed my instincts, I wouldn't be here, I am convinced of that,

because no other patient in that office with CML has survived as long

as I have. Now he calls me his miracle patient. Baloney, he had

nothing to do with it. He's Irish, so maybe he kissed the blarney

stone. LOL (I did, can't you tell?)

> For the longest time, I was treated as a second class

citizen. My goodness, if you have cancer and the people in the

office are lucky enough to have a nice job, why in the world would

they want to treat people so shabbily? I would be glad to trade

places with them if it was possible. I came for my CBC one day and

the lights were turned off. I asked if they had paid their electric

bill and they said it was because the receptionist had a migrane. I

think they finally figured out that she was ignoring the patients and

kept her back turned so you couldn't get her attention. They finally

got rid of her. Well one down and one more to go and when she is

gone, I will throw myself a party. LOL.

> All good wishes,

> Lottie

>

>

[Guest guest]

-

Hi , sorry you have same kind of onc [lol] no i live in

Baltimore, land area, is there anyone out there from this area?Do

you plan on staying with him or are you going to look for a new one?

-- In , Marie <dmarie1958@...> wrote:

>

> Esther,

> Your onocologist sounds a lot like mine, except mine has never

suggested I get a second opinion.  Do you happen to be from the West

Michigan Area?

>

>

>

> >

> > Dear Esther,

> > It may appear that I know a lot, but I really don't know much

> more than the average person on this list. There are several that

> know becoup more than I can cram in my chemo brain. I'm happy that

> several in the group find these posts useful enough to bring the

> information to their doctors. I went for so many years not knowing

> anything because my doctor didn't tell me anything and it took

years

> to learn that I had to do my own research and be my own advocate if

> I was to be able to find out the latest news and where the trials

> were, so I'm happy to share with anyone who is interested. I just

> remember what it was like for me for the first few years. I hate to

> see anyone in the dark about CML. Now they think I am outspoken.

> When you don't know anything, you don't know what questions to ask.

> > I had a big falling out with my local oncologist, not in words

> so much, but in being ignored after I went to MDACC. If I had not

> followed my instincts, I wouldn't be here, I am convinced of that,

> because no other patient in that office with CML has survived as

long

> as I have. Now he calls me his miracle patient. Baloney, he had

> nothing to do with it. He's Irish, so maybe he kissed the blarney

> stone. LOL (I did, can't you tell?)

> > For the longest time, I was treated as a second class

> citizen. My goodness, if you have cancer and the people in the

> office are lucky enough to have a nice job, why in the world would

> they want to treat people so shabbily? I would be glad to trade

> places with them if it was possible. I came for my CBC one day and

> the lights were turned off. I asked if they had paid their electric

> bill and they said it was because the receptionist had a migrane. I

> think they finally figured out that she was ignoring the patients

and

> kept her back turned so you couldn't get her attention. They

finally

> got rid of her. Well one down and one more to go and when she is

> gone, I will throw myself a party. LOL.

> > All good wishes,

> > Lottie

> >

> >