Getting Results from MDACC

May 8, 2005

Dear Listmates:

I would appreciate hearing from any of you who go to MDACC on a

consulting basis (not as part of a trial). Let me tell you what is

happening. I was diagnosed in 12/03 and went to MDACC in 1/04. They

intially thought they would enroll me in a study but it turns out

that I didn't meet some criteria, so I was told that I would be

followed " as if I were in a study " for the first 12 months. Well, I

went back in 4/04 and then was told that I should return in 7/04

which I did. All of this time I was being followed by a very able

local hemo onc in Florida where we live and by a hemo-onc in Kentucky

where we summer. At the 7/04 appointment I was told that I would be

seen only on a consulting basis and that my MDACC doc was not

my " primary onc " since I was not enrolled in a study.

OK so I regrouped, filled in my local Kentucy onc about this

change and went forward. All of this time the local oncs were not

receiving any test results or dictation from the MDACC onc and the

only written material I received were e-mails from the Physicians

assist. that briefly told me my BMB results. I returned to MDACC in

1/05, had a BMB, met with the doc and was told all was well and to

come back in July. At the end of February I received e-mail copies

of the results of the PCR, FISH and CYTO studies. No interpretation,

no Doctors notes.

Well Two weeks ago I had my three month appointment with my Florida

onc who " hit the ceiling " because in all of the time I have been

under his care he has never received any " consulting notes, test

results, or interpretations " from the MDACC doc. So he told me to

rectify the situation, stat.

Each time I go to MDACC I fill out the paper work to have these

results sent to the local oncs. WHen I called the Leukemia Center at

MDACC I was told that sending these results was the responsibility of

the doctor and his team. SO over a week ago I e-mailed the doc. I

have not heard anything from them.

Are there any of you who go to MDACC on a consulting basis, and do

you have these types of problems? How about recommendations for next

steps. I don't want to become a persona non gratis at MDACC, but I

am really frustrated.And I wonder what does it mean to be seen on a

consulting basis if there is no " consulting going on? "

Help.

Kathie in Florida (and occasionally, Kentucky)

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