Hi to the group

[Guest guest]

I just wanted to say hello to everyone and give you my CML history.

I was diagnosed on 9/1/99 at the age of 36, after a few months of

trying to figure out why I was having very bad rib pain and horrible

acid refulx (turned out to be sternum pain) My doc did a simple

blood test that showed a white count of 59,000 which led to a very

painful BMB at the local hospital which showed that I was 100% PH+.

I live in a very small town in southeast KS, so my doctor

recommended that I seek treatment in Houston at MDACC. Well, at that

time, the only thing that was mentioned to me was that I would

probably have to have a transplant, and since my parents lived near

St. Louis, I decided to go to -Jewish hospital for my

treatment so that if I did have transplant, my parents would be

there to help me during that time.

Turns out that none of my 4 siblings are matches so I was started on

daily shots of inteferon (Gleevec was still in trials and known as

STI-571 and I did not qualify for any trials) I shot myself up for

18 months. I traveled the 6 hours to St Louis every 3 months and

hated every minute of it. My doctor did not let me know what was

going on and I did not know what to ask. The place was run very

poorly and it was nothing to have your appointment run 3 to 4 hours

behind.

Anyway, I finally joined the CML site in late 2000 and started

learning some things. I decided to quite going to St. Louis and

started seeing a local hemo-onc who knew next to nothing about CML,

but treated me better personally. The inteferon caused all my counts

to drop dramatically, and I even had to have red cells infused once.

My doctor stopped the inteferon and I started Gleevec after it was

approved by the FDA. That lasted a whopping 2 months when my counts

again dropped and I stopped the Gleevec while waiting for them to

come up....well, they never did come back up. I was on no treatment

for almost a year when I finally decided that I would seek another

opinion from a CML specialist

So.........off to Houston I went in April 2002. I have been on

Gleevec since that time. I started at 400mg and then raised to

600mg. Now back to 400mg. I had some problems arise with extra

abnormalities showing up -7 and +8 so my doc thought I might be

developing MDS. This never happened (thank God!) and the

abnormalities have never appeared again. I have a BMA every 6 months

now (was every 3 till this last year) I am a zero on cytogenetics

and really low on the PCR. I have gone through the entire donor

search process and never came close to finding a match. I guess that

just makes me a " one-of-a-kind "

I have read all of the posts on Rob's CML site (from message #1) but

have never felt very comfortable posting. I never seem to know what

to say, or it comes out sounding different than I want, or I end up

writing a book (kinda like now!!!) I have always appreciated the way

the C. was such an excellent welcomer to the newbies and how

she and Tracey could answer medical questions so well!!!

I am glad to be here and sorry that I rambled on for so long. Here

is to having a great group that starts with caring and HOPE!!

Thanks for reading (if you made it this far!)

Trisha--age 41

dx 9/99

Parsons, Kansas

[Guest guest]

Hi Trisha,

Your post is so warm and inspiring! Thank you for sharing your

story with us.

It's funny, some of us have been here so long that we start to

forget some of the histories of the older members and it's so great

to hear them again.

Your story is bound to inspire many, it sure inspires me!

Take care,

Tracey