CML specialist

[Guest guest]

Dear Beverly,

I had a similiar situation. I went to a local oncologist for 4 years, being

lied to and never told my counts were crashing and never given a Procrit shot

until I inquired about it. The office said I couldn't get it, but someone in

another trial I was in sent me an email saying she got it. I brought that to

the office and that's when they started looking into it. I got my Procrit shots

every week after that until Medicare stopped it. Now I am transfusion dependent

and I'm sure Medicare pays a lot more for that than a shot. When there was a

new trial coming on the horizon, I asked if he knew about it and he said " No, I

don't, but when you find out, I'm sure you will tell me. " That is why I travel

to MDACC, a 7 hour drive. ASH conventions are often held in New Orleans, but

not one of the oncologists bother to go and I shamed them. That is the tip of

the iceberg. Because I go to MDACC, I am now a stepchild when I go for my

CBC's. They come to visit me in the hospital, but do absolutely nothing and I

never requested them. We have to weigh all the evidence and look at our own

situation, then make our own choices, no matter how far we have to travel. Some

people are lucky enough to live in a city where they have a CML specialist - and

I do mean lucky. My best to everyone who has CML, it's like living in a sort of

limbo.

Hands & hearts,

Lottie Duthu