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[Guest guest]

Hi folks, If I repeat myself here, chalk it up to old age, but so much is

going on with my poor old body lately.Have felt crappy all week, and my BP was

good but my pulse was running from 98 to 117, pounding in my head. Had two

dizzy spells the other day, but chalked that up to waiting to long for lunch.

Had labs yesterday, and when the trial nurse in Ann Arbor saw them, she told me

to go to ER. So I did, and they did a cat scan because of the dizzy spells, and

an EKG and an X ray and labs, said I was dehydrated and go see my doctor today.

I did. I'm liking this guy more and more. He said to quit the BP meds, cozaar

and

hydrochlorathiazide, and allopurinal and lasix. Keep on with the potassium,

and set me up for a transfusion for Mon. and labs Tues to check on the kidneys,

as whatever count for them is high, along with several others. And NO

angioplasty on Monday. The drugs he told me to quit all effect the kidneys. So

does the dye they used for the angiogram, and it should not still be doing that

after two weeks. So Fri. it's labs for Ann Arbor, Sat. it's a cross match for

the transfusion, Mon. it's the infusion. Tues it's more labs for the kidneys,

unless Fri labs tells them what they want to know. I feel like a pin cushion.

And all during this time I am trying real hard not to eat anything bad, because

it's weigh in on Mon. I wonder how much blood weighs, guess I'll weigh in before

I go for it..LOL. So far the only good thing is I didn't have to go to Ann Arbor

and be infused, sure didn't feel up to it.

A thought about Bob Wilhelm and the rest of us that have gone into trials.

Usually we enter a trial because it is the last chance to keep on living, so we

take the risk. And for some of us it works, for Bob it has worked real well,

and for so many others of us. But though it is helping us live with CML, what

is it doing to the rest of our organs? Heart, lungs, kidneys and so on? I am

not complaining here, I have been able to live 8 1/2 years longer than I was

supposed to because of Gleevec, Trisenox, Zarnestra, Sprycel and now XL228. And

God knows with all of us, how many other drugs we've had to take to counter the

chemo drugs. I count my blessings every night for my good health, then laugh,

because basically I think I am healthy - for the shape I'm in and what I have.

My heart goes out to and Bob, for all that they have been through and for

what is to come. We are so blessed for every day, thanks to all the research,

and some day being a human guinea

pig is going to pay off for everyone. Love, Bobby

ps - I don't mean to scare anyone that is new to these drugs, it is just that

in the beginning of new trials it is a lot tougher because of the trial

protocols, than it is after the drug has been FDA approved. Just thought I'd

toss that in.....