Long Drive

[Guest guest]

Dear ,

So nice to see you surface with your information. Congratulations on your

PCRU. I have known people who got that way without having a CML specialist in

spite of having a doctor who didn't seem to know much about CML. Sometimes it's

good Karma. LOL.

Most general oncologists have very few patients with CML, since it's so

rare, so it will be a rarity to find a specialist outside of a research area.

I'm glad you found a doctor you like and only have to drive 38 miles. We travel

400 miles and if that's what it takes, I will continue as long as I can to have

peace of mind, at least until I reach PCRU. My local doctor was a big

disappointment to me and I am kicking myself for staying with him for 4 years in

a " nothing " trial that no longer exists. I was lied to in order to cover up his

non-knowledge and his BMB's hurt like the dickens. I still go there for my

CBC's because it's required that I see an oncologist as part of the protocol,

and I don't care that I am treated like a step-child, I took charge of my own

health for a change and now I advocate for myself. In the past I didn't know

that much about CML, so I was not as knowedgeable as I should have been and I

was bambzooled into staying in a defunked trial that was an utter waste of time

when I could have been going to a research center the whole time. There they

have trials because they are a research center and the local oncologists have to

wait until the drugs have been appraised by the FDA. Still they don't have

experience in giving the correct dose. My former doctor would ask me about

Gleevec and what I thought he should give a new patient. I tried to involve him

in the whole process I was going through, so he would be on the ground floor

when it was approved. He said he didn't have time and when it happened, he could

ask me. I once asked him a question and his reply was, " I don't know, but when

you find out, I'm sure you will tell me. "

My doctor at MDACC has told me that any doctor who says he trained at their

facility to give him his name and he can tell me if he did go there. He said

just because they " trained " there, it doesn't make them a specialist. When they

say " trained " , I don't know how long a period they were there, so I believe in

checking the credentials of a doctor. I saw a TV show last night about a man

who was not even a doctor practicing medicine. He spent a little time in jail

and went on to another city to again practice medicine, using the same doctor's

name. It was so easy to write the medical board and ask for a copy of the real

Dr. ' medical degree. How brazen is that? Continued good luck to you

. See you on Skype.

Blessings,

Lottie