Re: For Greg (everyone pls read differences in Summit/Challenge in another post)

[Guest guest]

Hi !

Yes, I would LOVE to hear the " personal perspectives " from the days

before Gleevec (and the other TKIs). I have read some of the written

history of those days, yet find it to sometimes be a bit generic.

That is why I earnestly say to you and everyone, " I can't do this as

effectively without your help. " Everyone's journey is different and

sometimes unique subtleties go unnoticed. I am willing to do this by

phone, email, snail-mail, whatever it takes to get as equipped as

possible prior to boarding the plane on July 24th.

Our journey, although it didn't occur during the early days of

Gleevec, did have its own set of problems. As you know, Gleevec

didn't work for us, Sprycel only 10 weeks, and Tasinga, well, thats

another story for which the verdict is still out (for everyone

reading this...that last sentence is not a negative in the least).

The thing we need to be cautious of is that complacency never sets

in...(again, to everyone out there....that statement shouldn't be

interpreted as being an alarmist, " running scared " , etc., I am

meaning that we should learn all we can about it and and be proactive

in our approach to its treatment...we also must share our stories for

the greater good.) Someone once said in a post, " I'm just going to

be smart with this thing [and I won't have any trouble] " . Well, we

WERE smart, we did our research, we sought out help in many places,

and yet, you know our outcome (again, everyone's journey is unique).

I've been in contact with most of those you mentioned and I am so

very happy that each of you have felt comfortable to share those

stories. I've also received stories from individuals that have only

just recently been diagnosed. Together, these stories, ideas, and

thoughts help to paint a more complete picture of how CML is

approached these days. Although there has been massive progress in

CML's treatment, and certainly its survivability, there's a long way

to go. Everyone facing this type of journey has an important role,

regardless of where/when they take that first step on the CML road.

Lastly, I do apologize that you had a problem with the form. Your

story, though, is an important part of this work ( " Faces of CML " ) and

I will do everything in my power to make the task of coveying it

easy. ;-)

Thank you so much for helping by sharing your story. I can't wait to

be able to include it in this project! I appreciate you and all the

many suggestions, words of encouragement, and information you have

supplied to my family and I over the past few years!

With much love,

Greg

If any of you reading would like to talk more via phone, please email

me directly at gstephens@... and we will get that set

up! Thanks!

>

> (Honestly, I would love for someone to

> discuss the major change in the treatment of CML over the past 10

> years. It is certainly something that has been revolutionary.)

> _____________________

>

> Hi Greg,

> You have a number of people on this list who can speak from the 10

year

> perspective....I can think of Bobbie, Zavie, Lottie, Zazzie,

> myself........and there are others.

> Would you like us to do that separately from our form interview so

it is

> easier for you to pick that out. We were there when there was very

limited

> hope with this dx....most of us knew a window of 3-5 or 5-7 year

expected

> survival. And then we fought to get on Gleevec, or went into

lotteries (and

> some passed on while waiting for there spot in a trial).

>

> This was all part of my history with the form I filled out on your

> website....but it got erased (poof!).

> Maybe those of us with a 10 year or more history can do a separage

e-mail

> to you outlining that aspect (how it affected us personally, our

families,

> etc).

> Just a thought.

> C.

>