Re: Raising Money - Viriginia

October 21, 2010

I am involved in raising money for the LLS and in volunteering for several of

the programs they offer to patients and their families because I desperately

need to feel I am doing something to help. This is the only way I know how.

People helped ME when I needed it most--I'll never forget the feeling when I was

in the trial and it became obvious that STI 571 was going to be a miracle. It

felt like someone reaching down into the water and saving me from drowning.

After 12 years, I AM alive and well and relatively free of fear and it is

indeed precious. I just want to help others get to the other side of that

mountain.

------------------------------------

Hi Virginia,

I want to say a big THANK YOU and KUDDOS to you for all you have done, and I

have followed you for years.

You are a Gleevec pioneer, one of the first to try this drug and help prove it's

effectiveness. Then your fundraising to continue the work of the LLS has been

phenomenal (?sp).

I am beginning to really believe that unless you were actually diagnosed before

Gleevec was on pharmacy shelves, and actually were told that you only had 3-5

years to live, then the appreciation for how far things have come with CML

treatment and survival is generally not there. Actually some of us knew that

right from the beginning, when newly diagnosed just went to the corner drug

store....and did not 'fight' to get into trials to save their lives. They seemed

to complain more about side effects, when the old timers were just happy to be

alive and felt fortunate to have any drug available.

I think your 'relatively free of free' says it all. When you and I got a CML

diagnosis, our future was just instantly wiped out. Jerry M. once told us that

he had a t-shirt that said " no future plans " . And another cml fellow said that

he kept wondering if he should buy a new pair of leather shoes or not, because

they last so long. I think those of us who had these thoughts in our head, do

think of CML as being " essentially cured " ......or at least not usually a fatal

disease, a world of difference. Maybe people would prefer the term 'durable

remission' which was applied to those who were successfully treated with

interferon. But the quote about 'essentially cured' was really a release to the

public who have almost no knowledge of leukemia, and it was to describe the

present day status of CML for many.

Again, thanks for all that you do.

C.

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