Re: Finding a good CML doctor?

[Guest guest]

Hi ,

You wouldn't be the first person to change doctors that's for sure.

Many of us have changed doctors over the years for a variety of

reasons. Some change because the doctor they were seeing just didn't

know enough about CML, others because the doctor had a terrible bed

side manner. The bottom line is that this is your life and you

deserve the best doctor you can find.

As you probably know, CML is a fairly rare disease so it stands to

reason that not all doctors are going to be up to date on it. I

would even say that the majority of doctors have little experience

with it and I have heard all kinds of stories of incompetence due to

inexperience.

I can't stress this enough, it is your life that is at stake, you

can't afford to be treated by someone who doesn't know what they're

doing. In the last teleconference that I posted a summary to, the

doctors also stressed the importance of getting a doctor who is

familiar with CML and Gleevec.

I don't know where in Florida you are but the Moffitt Cancer Center

seems to be a big name in Florida. Hopefully list members from

Florida will write in with some specific recommendations. It may be

helpful if you mentioned the general area of Florida that you're

looking for.

Good luck and take care,

Tracey

>

> My current Onc was assigned to me when I was first dx'ed in

July '06.

> She put me on 400mg Gleevec and things have been improving quickly,

> but I get the feeling that she is not very experienced with CML.

I've

> pointed out things that she wasn't aware of which has worried me.

>

> But now I'm having issues with my WBC and ANC counts which have

slowly

> crept lower and lower. I don't have my most recent CBC results, but

> I'll pick them up today and post the numbers.

>

> Anyways, my Onc wants me to stop taking Gleevec and start with

weekly

> CBCs. There sure is a lot of info out there that states NOT to stop

> Gleevec and still many others that have taken " holidays " .

>

> How do you find a good CML doctor, preferably in Florida where I

live?

> Thanks for any input.

>

>

>

[Guest guest]

Matt lives maybe he could help need to know what area good luck. paul TN.

[ ] Finding a good CML doctor?

My current Onc was assigned to me when I was first dx'ed in July '06.

She put me on 400mg Gleevec and things have been improving quickly,

but I get the feeling that she is not very experienced with CML. I've

pointed out things that she wasn't aware of which has worried me.

But now I'm having issues with my WBC and ANC counts which have slowly

crept lower and lower. I don't have my most recent CBC results, but

I'll pick them up today and post the numbers.

Anyways, my Onc wants me to stop taking Gleevec and start with weekly

CBCs. There sure is a lot of info out there that states NOT to stop

Gleevec and still many others that have taken " holidays " .

How do you find a good CML doctor, preferably in Florida where I live?

Thanks for any input.

________________________________________________________________________________\

____

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[Guest guest]

I live in St Pete Florida and I really like my doctor. Everything he has

said and done has been right on to this point. I went from being in the

hospital three weeks go and feeling like crap to now working full time. He

had me on hydrea to lower the white blood count and another med for uric

acid, which I am still on. Went on 400 MG Gleevac last week and he gave me

two weeks worth and said we would bump up MG after a couple weeks and tests

if everything went well. He has a lab in his office, great staff, etc.

Inititally when they were not sure what type of leukemia I had that were

talking about moffit cancer center, but once confirmed CML my doctor said I

have other patients with it and we can treat you right here.he said that

with confidence. And his bed side manner is great. He is a board

cerftified oncologg/hematology. Dr. Anil Reiker 727 381 3761. It has only

been three weeks but so far I am thrilled with him. He has been practicing

for 28 years.

Best to you!

Robb (husband of Laurie)

_____

From: [mailto: ] On Behalf Of Tracey

Sent: Tuesday, January 16, 2007 10:57 AM

Subject: [ ] Re: Finding a good CML doctor?

Hi ,

You wouldn't be the first person to change doctors that's for sure.

Many of us have changed doctors over the years for a variety of

reasons. Some change because the doctor they were seeing just didn't

know enough about CML, others because the doctor had a terrible bed

side manner. The bottom line is that this is your life and you

deserve the best doctor you can find.

As you probably know, CML is a fairly rare disease so it stands to

reason that not all doctors are going to be up to date on it. I

would even say that the majority of doctors have little experience

with it and I have heard all kinds of stories of incompetence due to

inexperience.

I can't stress this enough, it is your life that is at stake, you

can't afford to be treated by someone who doesn't know what they're

doing. In the last teleconference that I posted a summary to, the

doctors also stressed the importance of getting a doctor who is

familiar with CML and Gleevec.

I don't know where in Florida you are but the Moffitt Cancer Center

seems to be a big name in Florida. Hopefully list members from

Florida will write in with some specific recommendations. It may be

helpful if you mentioned the general area of Florida that you're

looking for.

Good luck and take care,

Tracey

>

> My current Onc was assigned to me when I was first dx'ed in

July '06.

> She put me on 400mg Gleevec and things have been improving quickly,

> but I get the feeling that she is not very experienced with CML.

I've

> pointed out things that she wasn't aware of which has worried me.

>

> But now I'm having issues with my WBC and ANC counts which have

slowly

> crept lower and lower. I don't have my most recent CBC results, but

> I'll pick them up today and post the numbers.

>

> Anyways, my Onc wants me to stop taking Gleevec and start with

weekly

> CBCs. There sure is a lot of info out there that states NOT to stop

> Gleevec and still many others that have taken " holidays " .

>

> How do you find a good CML doctor, preferably in Florida where I

live?

> Thanks for any input.

>

>

>

[Guest guest]

I live in St Pete Florida and I really like my doctor. Everything he

has said and done has been right on to this point. I went from being

in the hospital three weeks go and feeling like crap to now working

full time. He had me on hydrea to lower the white blood count and

another med for uric acid, which I am still on. Went on 400 MG

Gleevac last week and he gave me two weeks worth and said we would

bump up MG after a couple weeks and tests if everything went well.

He has a lab in his office, great staff, etc. Inititally when they

were not sure what type of leukemia I had that were talking about

moffit cancer center, but once confirmed CML my doctor said I have

other patients with it and we can treat you right here…he said that

with confidence. And his bed side manner is great. He is a board

cerftified oncologg/hematology. Dr. Anil Reiker 727 381 3761. It

has only been three weeks but so far I am thrilled with him. He has

been practicing for 28 years.

Best to you!

Robb (husband of Laurie)

[Guest guest]

I'm in Palm Coast between ville and Daytona.

> >

> > My current Onc was assigned to me when I was first dx'ed in

> July '06.

> > She put me on 400mg Gleevec and things have been improving quickly,

> > but I get the feeling that she is not very experienced with CML.

> I've

> > pointed out things that she wasn't aware of which has worried me.

> >

> > But now I'm having issues with my WBC and ANC counts which have

> slowly

> > crept lower and lower. I don't have my most recent CBC results, but

> > I'll pick them up today and post the numbers.

> >

> > Anyways, my Onc wants me to stop taking Gleevec and start with

> weekly

> > CBCs. There sure is a lot of info out there that states NOT to stop

> > Gleevec and still many others that have taken " holidays " .

> >

> > How do you find a good CML doctor, preferably in Florida where I

> live?

> > Thanks for any input.

> >

> >

> >

>

[Guest guest]

Hi ,

I asked a friend of mine to recommend someone in Florida for you and

she said that Dr. List from the Moffitt Cancer Center is the man to

see. She's had CML for longer than me (5+ years) and she's seen a

few different doctors during that time (as most of us have, who've

been at it this long) and she speaks very highly of Moffitt as well

as Dr. List.

I don't know how far Tampa is for you but if it's a reasonable

distance, you might want to check it out. Their website is:

http://www.moffitt.usf.edu/

and the contact info for Dr. List is:

http://www.moffitt.usf.edu/Site.aspx?

spid=DAE8FE136FFF4F26AAFD180F8617C475 & SearchType=Physician

If Tampa is too far for you, perhaps you could ask your family doctor

to recommend someone who is more knowledgeable with CML?

Take care,

Tracey

> > >

> > > My current Onc was assigned to me when I was first dx'ed in

> > July '06.

> > > She put me on 400mg Gleevec and things have been improving

quickly,

> > > but I get the feeling that she is not very experienced with

CML.

> > I've

> > > pointed out things that she wasn't aware of which has worried

me.

> > >

> > > But now I'm having issues with my WBC and ANC counts which have

> > slowly

> > > crept lower and lower. I don't have my most recent CBC results,

but

> > > I'll pick them up today and post the numbers.

> > >

> > > Anyways, my Onc wants me to stop taking Gleevec and start with

> > weekly

> > > CBCs. There sure is a lot of info out there that states NOT to

stop

> > > Gleevec and still many others that have taken " holidays " .

> > >

> > > How do you find a good CML doctor, preferably in Florida where

I

> > live?

> > > Thanks for any input.

> > >

> > >

> > >

> >

>

[Guest guest]

Although we live in the Los Angeles area now and are very happy with our

doctors down here--we will be moving up to Northern California in a year.

Does anyone know of any good CML doctors in the San Francisco, Sonoma County

area of Northern California?

Regards

Weez

>From: " Tracey " <traceyincanada@...>

>Reply-

>

>Subject: [ ] Re: Finding a good CML doctor?

>Date: Wed, 17 Jan 2007 19:30:10 -0000

>

>Hi ,

>

>I asked a friend of mine to recommend someone in Florida for you and

>she said that Dr. List from the Moffitt Cancer Center is the man to

>see. She's had CML for longer than me (5+ years) and she's seen a

>few different doctors during that time (as most of us have, who've

>been at it this long) and she speaks very highly of Moffitt as well

>as Dr. List.

>

>I don't know how far Tampa is for you but if it's a reasonable

>distance, you might want to check it out. Their website is:

>http://www.moffitt.usf.edu/

>

>and the contact info for Dr. List is:

>http://www.moffitt.usf.edu/Site.aspx?

>spid=DAE8FE136FFF4F26AAFD180F8617C475 & SearchType=Physician

>

>If Tampa is too far for you, perhaps you could ask your family doctor

>to recommend someone who is more knowledgeable with CML?

>

>Take care,

>Tracey

>

>

> > > >

> > > > My current Onc was assigned to me when I was first dx'ed in

> > > July '06.

> > > > She put me on 400mg Gleevec and things have been improving

>quickly,

> > > > but I get the feeling that she is not very experienced with

>CML.

> > > I've

> > > > pointed out things that she wasn't aware of which has worried

>me.

> > > >

> > > > But now I'm having issues with my WBC and ANC counts which have

> > > slowly

> > > > crept lower and lower. I don't have my most recent CBC results,

>but

> > > > I'll pick them up today and post the numbers.

> > > >

> > > > Anyways, my Onc wants me to stop taking Gleevec and start with

> > > weekly

> > > > CBCs. There sure is a lot of info out there that states NOT to

>stop

> > > > Gleevec and still many others that have taken " holidays " .

> > > >

> > > > How do you find a good CML doctor, preferably in Florida where

>I

> > > live?

> > > > Thanks for any input.

> > > >

> > > >

> > > >

> > >

> >

>

>

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[Guest guest]

At 08:05 PM 1/17/07 +0000, you wrote:

>Although we live in the Los Angeles area now and are very happy with our

>doctors down here--we will be moving up to Northern California in a year.

>Does anyone know of any good CML doctors in the San Francisco, Sonoma County

>area of Northern California?

Others from the area might respond....but I think one of the top docs from

UCLA moved on to US San Francisco..........

[Guest guest]

Thank you mucho Tracey! Tampa is about 3 hours from me which isn't too

too bad. I actually did meet with my primary today and asked her to

help me find a better Onc. The wheels are turning.

Of course one problem is finding a good doctor, the other is find a

good doctor in my health network for insurance. Ugh.

> > > >

> > > > My current Onc was assigned to me when I was first dx'ed in

> > > July '06.

> > > > She put me on 400mg Gleevec and things have been improving

> quickly,

> > > > but I get the feeling that she is not very experienced with

> CML.

> > > I've

> > > > pointed out things that she wasn't aware of which has worried

> me.

> > > >

> > > > But now I'm having issues with my WBC and ANC counts which have

> > > slowly

> > > > crept lower and lower. I don't have my most recent CBC results,

> but

> > > > I'll pick them up today and post the numbers.

> > > >

> > > > Anyways, my Onc wants me to stop taking Gleevec and start with

> > > weekly

> > > > CBCs. There sure is a lot of info out there that states NOT to

> stop

> > > > Gleevec and still many others that have taken " holidays " .

> > > >

> > > > How do you find a good CML doctor, preferably in Florida where

> I

> > > live?

> > > > Thanks for any input.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Hi ,

Another option you may want to look into is having two doctors. One

in a big center that would oversee your treatment and another one who

is closer to you who could give you requisitions and who would work

in collaboration with the " bigger " doctor. Many people have done

this with the big centers since it's no small feat travelling for

hours on end so they will only go to the " big " doctor once every 3 or

6 months and see the more local doctor in between intervals. Good

luck with whatever you decide.

Take care,

Tracey

> > > > >

> > > > > My current Onc was assigned to me when I was first dx'ed in

> > > > July '06.

> > > > > She put me on 400mg Gleevec and things have been improving

> > quickly,

> > > > > but I get the feeling that she is not very experienced with

> > CML.

> > > > I've

> > > > > pointed out things that she wasn't aware of which has

worried

> > me.

> > > > >

> > > > > But now I'm having issues with my WBC and ANC counts which

have

> > > > slowly

> > > > > crept lower and lower. I don't have my most recent CBC

results,

> > but

> > > > > I'll pick them up today and post the numbers.

> > > > >

> > > > > Anyways, my Onc wants me to stop taking Gleevec and start

with

> > > > weekly

> > > > > CBCs. There sure is a lot of info out there that states NOT

to

> > stop

> > > > > Gleevec and still many others that have taken " holidays " .

> > > > >

> > > > > How do you find a good CML doctor, preferably in Florida

where

> > I

> > > > live?

> > > > > Thanks for any input.

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

>