PCRU southern gentleman

[Guest guest]

Dear Matt,

You are indeed a southern gentleman to do this and report back to the group,

not that anyone who lives in the north, east or west would not do that, but I am

from the south and I have to take up for the southern gentlemen. LOL

If I'm not mistaken, Karl lives in NYC and he was on the VX680 and he said it

didn't do anything for him. I think the Peptide vaccine trial was done at

MDACC. Someone correct me if I am in error.

Your doctor is also nice to take the time to answer these questions that

benefit all of us. It seems strange to me that we have to ask someone to ask

their doctor for us. I have an arrangement with an oncologist who has offered

to answer questions, but be aware that he does not specialize in CML. I have

seen him at LLS seminars and he is very nice, very patient and I'm sure he would

try to find out the answers to any questions. In fact I suggested to the social

worker at LLS that at the next seminar we pass out index cards and suggest that

people ask questions, I will take the questions and field them to the doctor,

just to keep things from getting too bland. Most people would not stand up and

ask questions, but this way they can be anonymous. If no one asks, I would pose

the questions asked here as a backup. So put your thinking caps on folks and

come up with a question of your own. So between the two doctors, we should get

some answers to some perplexing questions. I hope you stay PCRU, too.

For general information to the group, Jimmy and I came home this afternoon.

He went right to bed and slept for a few hours and then I helped him get 13 days

of hospital crud off his skin. He said he feels like a new man. That's fine as

long as he doesn't think he is superman.

I know some of you may not know this story, but a couple of years ago, I

had pneumonia and after I was released from the hospital, continued to have

fever. My normal temp is 95 and hyperthermia is 94, so I am always cold. When

my temp does hover around normal or a little above, that is a spike for me and I

know I am coming down with something. Every doctor I saw shrugged his shoulders

and said I was fine. I got tired of the run around and went to the desk and

pounded it and said I wanted a sputum test for everything that would grow in a

lab. They obliged and after 9 days had passed the doctor himself called and

told me I had a very serious lung disease (not TB). After seeing all the drugs

I couldn't take on Sprycel, he called MDACC and got so flustered because of the

voice mail, so I said I would have someone contact him. This is what he told

them, " I don't know how to treat her. " Then he called and told me the same

thing.

He abandoned me and didn't refer me to another specialist in infectious

diseases. I found one through another doctor in New Orleans. Jimmy never

forgot that and when he saw that doctor pull his file while he was in ICU, he

hollered over to him and told him not to open his file, he would never make

another penny off him. I know the drugs he was on had a lot to do with it, I

don't think he would have said it the same way if he had seen him down the

hallway. The doctor closed the file and left. Well while I was getting

everything prepared to check him out, there was the doctor. He looked up,

smiled and said " Hello " . I was dumbounded, I would have thought he would ignore

me. I don't know, but maybe it took Jimmy's ire to get it across to him that

what he did was wrong and against the hippocratic oath he took. The end result

was all the other tests proved negative, so I was off the hook, which I think

was a miracle.

A southern old lady,

Lottie