Re: Beth's story

[Guest guest]

Hi Lottie,

Well, CML is quite the trickster, isn't it? Serves me right for going on an

international chat group saying how great I was doing! Woke up the very next day

with the beginnings (again) of a rash that has now spread down both arms and

across my chest. I e-mailed my doctor and I will be taking a 2 week drug holiday

starting on Thursday.

I'm not panicked about it, we are still playing with super small numbers, so I

believe I have wiggle room.

Lottie--you have had quite the adventure with this disease and your stories (and

Bobby's and Skip's) are what have allowed me to find my own peace. If all of you

have been able to co-exist so many years with this beast (despite having

atypical cases), there is no reason I can't either. :-)

Onward and forward. I guess I need to buckle up, because the roller coaster is

speeding up again.

Beth

[ ] Beth's Story

 

Wow, Beth, you have always been willing to share your story from time to time,

but this one has a collasal ending. You started from the beginning of your

journey and brought us up to date and what an ending!

This is what is so great about Ariad, it also attacks the T315i mutation. I

never

had a mutation, but in the very beginning about 15 years ago, they told me I

had a new cell line, but didn't know what it was. Eventually it was no longer on

the radar screen, but I was always curious about what it was and what happened

to it. The first trial I was on was as useless as teats on a boar hog. I had to

adjust

my Hydrea every week because of the highs and lows. Eventually I had to take

more and more and after I called the NCI to ask about the drug, they said they

couldn't tell me anything for 10 years. Well I had already used up 4 of the 3

1/2 to 5

years they gave me, so I quickly went to MDACC and have been kicking myself

in the rear end ever since for not moving faster. I belonged to the ACOR group

and once left over an argument with Joyce, we heard zilch.

During that time, I met Gay Bratton way down in San who recommended

Dr. Keating. At the time I didn't know he was a CLL specialist, but hey, he was

absolutely the best and he did for me what everyone else was doing and as soon

as they opened up the BMS trials, he got me into it. I know Gay will agree with

me

that you will not find anyone sweeter and on the ball. It is strange that my

journey

had so many twists and turns over the years and all the trials. At the time I

met Gay, she had foot surgery and was in a wheel chair. When Dr. Keating called

and said to come to Houston immediately for the BMS trial, I was recovering from

foot surgery and was

also in a wheel chair. We got ready and left in 2 days and stayed for 7 1/2

weeks.

One of the best things to remember about the trials is the people I have met

along

the way, in person and online. Everyone has a story to tell, like me and Beth

and I hope

you all will consider sharing yours. Let's make next week sharing week to tell

your story.

I am so happy for you, Beth, that you have found that place where you no longer

panic and have found peace. I certainly understand your words of wisdom,

" ....I'm in a good place and I want to enjoy the present. I'll deal with

tomorrow when it comes. " I always remember Annie's song, " The Sun Will Come Up

Tomorrow " . I saw the broadway show and the movie and I will never forget her

singing that song and the positive message it gave me. I want you to look back

and remember this as a happy time for a long,

long time. It was your own courage that brought you this far, that and the grace

of God.

Blessings to everyone,

Lottie Duthu