MDACC visit

[Guest guest]

Dear Barb,

Sorry you were disappointed with your visit, but I think all the doctors

leave it up to their nurses and PA's to do the major work. They teach, do

research, make hospital rounds, write for journals and see patients for trials,

so that leaves them little time for patient's extended visits. You will be

assigned a Research Nurse whom you can write any time and who will get back to

you. They should have given you all of their phone numbers and faxes, as well.

Most time I ever had was 5 minutes, but I had a list of questions and we packed

it all in. Maybe the image you had in your mind may have turned you off, but I

think you will find that in just about any CML specialist. Bobby drives all the

way to Ann Arbor from Ohio and sees the doctor for a minute or two. His nurse

takes care of the rest.

The frequent ECG's (their acronym) are to check if your heart is able to

handle the drugs. Remember if they are going to kill cancer, they are potent.

Read the directions and they warn you to wash you hands after you handle the

pills and to keep your hands away from your eyes. You will get your information

by bits and pieces, a little here and a little there.

______________________________

Skip is right we don't want to be all inclusive. He's our longest living member

and we want to include him, maybe have his own shirt, whatever he wants on it.

I'm sure you, Barb could put whatever he wants on his. We can have some for

turtles, too, then no one would be left behind. If we want to sell them, we

could donate the profits to LLS for their research. Let's get our think tank

together. Send in your suggestions to Zavie and let him collect them and then

present them to the committee, whomever you agree upon.

You can pick the committee from names submitted by the group. Let's not let

this die in committed as they do in congress. We should be able to buy

discounted t-shirts from a good company who has good workmanship on their

merchandise.

Glad you are back, tell us more when you find out more.

Hands & hearts xoxo

Lottie Duthu

[Guest guest]

Dear Lottie, if you hear of a mistake, and they accidentally spit one out with

CMML, on it, please don't throw it out, I'll buy it! Oregon

________________________________

From: Lottie Duthu <lotajam@...>

CML < >

Sent: Wed, January 6, 2010 10:21:05 PM

Subject: [ ] MDACC visit

 

Dear Barb,

Sorry you were disappointed with your visit, but I think all the doctors leave

it up to their nurses and PA's to do the major work. They teach, do research,

make hospital rounds, write for journals and see patients for trials, so that

leaves them little time for patient's extended visits. You will be assigned a

Research Nurse whom you can write any time and who will get back to you. They

should have given you all of their phone numbers and faxes, as well. Most time I

ever had was 5 minutes, but I had a list of questions and we packed it all in.

Maybe the image you had in your mind may have turned you off, but I think you

will find that in just about any CML specialist. Bobby drives all the way to Ann

Arbor from Ohio and sees the doctor for a minute or two. His nurse takes care of

the rest.

The frequent ECG's (their acronym) are to check if your heart is able to handle

the drugs. Remember if they are going to kill cancer, they are potent. Read the

directions and they warn you to wash you hands after you handle the pills and to

keep your hands away from your eyes. You will get your information by bits and

pieces, a little here and a little there.

____________ _________ _________

Skip is right we don't want to be all inclusive. He's our longest living member

and we want to include him, maybe have his own shirt, whatever he wants on it.

I'm sure you, Barb could put whatever he wants on his. We can have some for

turtles, too, then no one would be left behind. If we want to sell them, we

could donate the profits to LLS for their research. Let's get our think tank

together. Send in your suggestions to Zavie and let him collect them and then

present them to the committee, whomever you agree upon.

You can pick the committee from names submitted by the group. Let's not let this

die in committed as they do in congress. We should be able to buy discounted

t-shirts from a good company who has good workmanship on their merchandise.

Glad you are back, tell us more when you find out more.

Hands & hearts xoxo

Lottie Duthu

[Guest guest]

so that leaves them little time for patient's extended visits. You will be

assigned a Research Nurse whom you can write any time and who will get back to

you. They should have given you all of their phone numbers and faxes, as well.

Most time I ever had was 5 minutes, but I had a list of questions and we packed

it all in. Maybe the image you had in your mind may have turned you off, but I

think you will find that in just about any CML specialist.

______________________

Hi Lottie and others,

This is NOT the case at all at OHSU, seeing Dr. Druker, Dr. Mauro or Dr.

Deininger.

There is only one dept, you do not run all over the hospital. First they draw

your labs so the doctor will have the results at his visit.

Then you have 30 min. scheduled with the doctor's research nurse, who will

answer a lot of questions about side effects, etc.

Then you have 60 min scheduled with the doctor if he is also doing a bone marrow

biopsy at that visit......or 30 min. if it is just an appointment.....and you

really have 30 minutes of his time! I have never been rushed at OHSU and many

patients scheduled for a first appointment has reported back that the doctor has

spent more than an hour with them, answering all their questions.

Dr. Druker is known to look you in the face and say.... " are you sure you don't

have any other questions? "

I have also been to MDACC for 2 visits for a trial before Gleevec, and another

time for a consult with Dr. Talpaz. For me, MDACC is a bit like a zoo. In fact,

my first visit there for triple therapy, I was supposed to see Dr. Kantarjian

and he was running late, and the nurse asked me if it was OK if I only saw the

PA and I said " no " ....I die not fly all the way from Oregon to Houston to just

see a PA. When Dr. Kantarjian came into the room, he did spend some time with

me.

So, anyone who wants really personal attention, I highly recommend OHSU.....over

the years I don't remember anyone saying they were dissatisfied with the

attention they got there, and there were many paitents who flew across country

to see Dr. Druker and Dr. Mauro.

Just wanted to put this information out there.

C.

[Guest guest]

I had an appt with my Onc. this week - the appt. was for 3:30 pm and we didn't

get in until 5:15pm - I met with the nurse first and told her that I had alot of

questions, when the Dr. came in she said I know you have alot of question,but I

still have 3 patients to see and I have to be out of here by 5:30 - suffice it

to say I was not pleased...I asked what questions I could and then asked to get

a referral to the specialist...hopefully I will get more time with him!

Cheryl

>

> so that leaves them little time for patient's extended visits. You will be

assigned a Research Nurse whom you can write any time and who will get back to

you. They should have given you all of their phone numbers and faxes, as well.

Most time I ever had was 5 minutes, but I had a list of questions and we packed

it all in. Maybe the image you had in your mind may have turned you off, but I

think you will find that in just about any CML specialist.

>

> ____________ _________ _

>

>

>

> Hi Lottie and others,

>

> This is NOT the case at all at OHSU, seeing Dr. Druker, Dr. Mauro or Dr.

Deininger.

>

>

>

> There is only one dept, you do not run all over the hospital. First they draw

your labs so the doctor will have the results at his visit.

>

> Then you have 30 min. scheduled with the doctor's research nurse, who will

answer a lot of questions about side effects, etc.

>

>

>

> Then you have 60 min scheduled with the doctor if he is also doing a bone

marrow biopsy at that visit......or 30 min. if it is just an appointment.

.....and you really have 30 minutes of his time! I have never been rushed at OHSU

and many patients scheduled for a first appointment has reported back that the

doctor has spent more than an hour with them, answering all their questions.

>

>

>

> Dr. Druker is known to look you in the face and say.... " are you sure you don't

have any other questions? "

>

>

>

> I have also been to MDACC for 2 visits for a trial before Gleevec, and another

time for a consult with Dr. Talpaz. For me, MDACC is a bit like a zoo. In fact,

my first visit there for triple therapy, I was supposed to see Dr. Kantarjian

and he was running late, and the nurse asked me if it was OK if I only saw the

PA and I said " no " ....I die not fly all the way from Oregon to Houston to just

see a PA. When Dr. Kantarjian came into the room, he did spend some time with

me.

>

>

>

> So, anyone who wants really personal attention, I highly recommend

OHSU.....over the years I don't remember anyone saying they were dissatisfied

with the attention they got there, and there were many paitents who flew across

country to see Dr. Druker and Dr. Mauro.

>

>

>

> Just wanted to put this information out there.

>

> C.

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>

>

>

>

>

>

>

>

>

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>

[Guest guest]

MDACC  was a zoo.  the first day there we spent 9 hours, and I don't think

that included the bma.  That is one huge hospital, 9-10 floors of cancer

patients, one cannot expect to get in and out in a hurry. Waiting for a bma/bmb

could take over 2 hours.  At U of Mich. it is rare to wait for any procedure,

they are very efficient there, like OHSU, and I just love Dr. Talpaz.

____________________________

Hi Bobby,

When I did see Dr. Talpaz at MDACC for a consult, he spent all the time I needed

with me, to answer my questions. Also, I was organized with my questions and I

expected that....which I think helps.

I think Dr. Talpaz is much happier (from what I hear) at Ann Arbor, MI because

he has a more personal situation like Dr. Druker has at OHSU.

At OHSU, the doctor himself does the bone marrow biopsy, which I really

appreciate.....why would I want someone with about 6 weeks of training doing

that, as is done at MDACC (but they do have some experienced long term techs,

and I would ask for one of them.)

I do agree that we have many dedicated cml doctors and they are not toally

responsible for the working situation....they are just dumped into the system.

MDACC works like an ol' time medical CLINIC..go here for this, go there for

that......and many people are given the same appt. time so that no time is

wasted if there is a no-show (that is why they schedule like that). It is how

county free medical clinics used to be set up....sit and wait for your visit.

Funny thing is that going to MDACC is not cheaper....it has the rep as being one

of the most expensive places to be treated....also because they do lots of

unnecessary (at times) tests. For my consult only (I was a Dr. Druker patient at

the time) they wanted to draw like 13+ vials of blood...which I refused....and

did that cause a commotion. You are put on auto-pilot and they expect to do the

same thing for each patient. Finally after getting a real nurse, and discussing

it with Dr. Talpaz, I think they drew about 4 vials of blood for necessary

testing for my visit.

(In case I sound like a rabble rouser....I worked in medical care for 30+ years,

so I knew my way around the park and was not afraid to question things.) Doing

lots of unnecessary tests is ONE of the main reasons that medical care is so

expensive in this country...in our system of payment, hospitals/clinics get

compensated for doing lots of tests, so there is that incentive to doing lots of

tests.

C.

[Guest guest]

Hi

My son has CML and we have been sending his labs to OHSU for about two years

now. Never had a problem and the people that work at the lab that I need to

call to order the PCR kit are absolutely the friendliest and most helpful

medical people I have dealt with along this road. Well, apart from Dr Druker,

his Nurse, Carolyn and the receptionist there

I will keep hoping right along with you that your numbers keep that downward

trend.

love and light

Annie

's mom

http://livingwithcml.blogspot.com

> so that leaves them little time for patient's extended visits. You will be

assigned a Research Nurse whom you can write any time and who will get back to

you. They should have given you all of their phone numbers and faxes, as well.

Most time I ever had was 5 minutes, but I had a list of questions and we packed

it all in. Maybe the image you had in your mind may have turned you off, but I

think you will find that in just about any CML specialist.

> ____________ _________ _

>

> Hi Lottie and others,

> This is NOT the case at all at OHSU, seeing Dr. Druker, Dr. Mauro or Dr.

Deininger.

>

> There is only one dept, you do not run all over the hospital. First they draw

your labs so the doctor will have the results at his visit.

> Then you have 30 min. scheduled with the doctor's research nurse, who will

answer a lot of questions about side effects, etc.

>

> Then you have 60 min scheduled with the doctor if he is also doing a bone

marrow biopsy at that visit......or 30 min. if it is just an appointment.

.....and you really have 30 minutes of his time! I have never been rushed at OHSU

and many patients scheduled for a first appointment has reported back that the

doctor has spent more than an hour with them, answering all their questions.

>

> Dr. Druker is known to look you in the face and say.... " are you sure you don't

have any other questions? "

>

> I have also been to MDACC for 2 visits for a trial before Gleevec, and another

time for a consult with Dr. Talpaz. For me, MDACC is a bit like a zoo. In fact,

my first visit there for triple therapy, I was supposed to see Dr. Kantarjian

and he was running late, and the nurse asked me if it was OK if I only saw the

PA and I said " no " ....I die not fly all the way from Oregon to Houston to just

see a PA. When Dr. Kantarjian came into the room, he did spend some time with

me.

>

> So, anyone who wants really personal attention, I highly recommend

OHSU.....over the years I don't remember anyone saying they were dissatisfied

with the attention they got there, and there were many paitents who flew across

country to see Dr. Druker and Dr. Mauro.

>

> Just wanted to put this information out there.

> C.

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