Thursday, September 18, 2008

My Recovered Post re Trip to Fred Hutch

Thanks to the help of Mishka, a Blogger Help Group Super Star, here is my retrieved entry regarding the trip to Fred Hutchinson:

WOW! What a place the Seattle Cancer Care Alliance and Fred Hutch is!
My transplant doctor, Dr. Jerry Radich, was incredible. He came in the
conference room wearing normal clothes, introduced himself as "Jerry",
and went from there.

Craig and I had our many questions answered. Things were explained in
a way we could understand. Graphs galore on the whiteboard. Processes
detailed, options reviewed, and statistics outlined. Three hours of
intense information!

Then we met with a Finacial Counselor. It looks like our health
insurance may finally give us really good coverage on something! Our
fingers are crossed and we will know more later. Unfortunately it was
confirmed that not all medical costs are covered, nor the required
caregiver (can be anyone-they train the caregivers) who will have to
be with me the whole time I am in Seattle (approx. 4 months), nor
travel and lodging. But at least they didn't ask for a $100,000

Then we toured the facilities, saw where different treatments and
procedures took place, and really got a good vibe.

The whole day was "good", positive, and provided us with a short-term,
intermediate-plan, and long-term plan for care. And getting well!

In a layperson's words, here's the bottom line:

The only treatments for CML are Gleevec and two other closely-related
drugs. I am clearly Gleevec-intolerant. I will try one or both of the
other drugs but it is 50/50 at best that I will tolerate either.

Beyond the drugs, the only other choices are no treatment or a bone
marrow transplant. The transplant is very scary stuff. Like really,
really scary. But, it is also the only hope for a cure, meaning long-
term remission.

So we decided it was time to change doctors in Spokane and I saw her
yesterday. The good news is that she seems committed to helping me.
The bad news is that 1. I have failure to thrive and am not well
enough to tolerate any treatment at this time and 2. She is even less
optimistic that the drugs and I will get along.

So, I now have begun more tests to make sure that "nothing has been
missed" and will develop a plan to get well enough to try the drugs so
I can see if I can tolerate them and when I will need the transplant.
But it does sound like a transplant is in the future.

Again, I have suffered the "writing makes it real" syndrome so I
apologize for the delay. Frankly, we are beyond overwhelmed and
struggling with all that must be done.

These are the basics. I'll write more soon.

Peace and much love,


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