Long Term CML

[Guest guest]

Tom, I hate to tell my story again, everyone has heard it time and again, but I

was diagnosed 7/96. In 1994, we had several invitations to go to Europe and see

the Eastern part, which we had never seen before. I said this might be my last

trip overseas and I was not going anywhere else until I went to Rome. I am so

glad I went through with my plans to go to Rome, because before I could make any

other plans, I was diagnosed with CML. I knew that was the end of the line to

cross the Atlantic. It didn't stop our domestic traveling. We got in the van

and I told my husband to keep driving and I would tell him when to turn around.

I had always wanted to see the Atlantic part of Canada, so we ended up in Nova

Scotia. Little did I know that there was a man living there who has had CML

longer than any person on record, Skip Duffie. He's the one

with the stories, the songs in his heart and his poetry.

I was in another trial for 4 years before Gleevec and 4 years on that, but the

needle never wavered from 100%, even on 600 mg. I lived with lots of nausea and

vomiting, swelling and weight gain and rash around my ankles. I talk to people

who took chemo for several weeks and had radiation, but then their treatment was

over. It's hard to imagine taking a chemo pill every day, but we do it because

we are not ready to throw the towel in. Yes, Bobby and I are running neck and

neck with the number of trials we were in, but she is a year ahead of me with

CML and the number of trials. She was on arsenic, but I guess I was lucky, I

skipped that one. She is always teasing me about being a year younger than me,

so that makes me the oldest broad on the list that we know of. She keeps

rubbing it in, so it is no secret.

Here, when someone hits a milestone for them, we all celebrate. Zavie has one

of those horns they blow for New Years day and makes a lot of noise we all look

forward

to it, because usually someone is being " pinned " for being CCR. For me it was

fleeting, but that number is mine and I hope to live up to it and catch up

again. If the news is not so good, we rally round and give encouragement.

Bobby is right, there is always someone who will answer you if you have a

question. We have some experts who are

hard to beat. One of the things I learned is tomorrow is another day and it

will probably be better than yesterday. That is how we get a grip on things.

Whatever we share is picked up by someone who needs the information, maybe a

newbie, or something long forgotten and suddenly remembered. It's like

butchering that little pig that went to market, nothing is wasted but the oink.

Keep us posted on your exploits, it's good to have one of our own " slay the

dragon " .

Carpe Diem,

Lottie Duthu