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Toxic State

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Sue (Aussie):

Toxic State was in reference to the Gleevec PK level in my blood stream. Normal,

Dr. Druker says is about 600 to 1200, I think were his numbers. Even when I

dropped to 400 mg and was tested for the first time, my PK level was 3100. This

was considered a toxic state. This was the period in time that caused the

fragile skin, the blood blisters on my fingers that looked like giant ruby rings

already built into my fingers, non-sparing " lasix " would not touch my swollen

symtpoms which included hardly seeing my eyes, could not wear my ankle bracelets

because they could not fit around my ankle, my fingers were swollen, cramping

was non-stop and would come whenever it wanted to, etc.. This is when I became

transfusion dependent (between 7.3 to 10.00), my hair began falling out and came

back in extremely curly. Bwecause my hemoglobin was so low, I could not take

tonic water for the cramps...instead I was on 3000 mg of Calcium a day. I was

on pRocrit every week forever!

In contrast, I bruise easily now but do not have the fragile skin. My

hemoglobin is holding on its own at about 11.8 (low right now)so I have not had

a transfusion since November of 2005, my nausea only appears once in a blue moon

now, I do not have the blood blisters any longer, my skin does not rip off

anymore, I am not on celebrex nor Lasix any longer. My calcium intake is still

at 2250 a day (lower than the 3000). Life is good! I am doing so much

better!!! I no longer take Procrit although it is still on my chart that if I

go below 10.0 I am still allowed to get due to history.

, I do love you dearly. You were my very first contact with the CML world.

It is so true that Dr. Druker does know each of his patients VERY well. He

treats each patient differently. However, when my husband and I go to see him,

Bobby (my husband) gets Dr. Druker to talk about what if theories and what would

he do if it were his wife, etc. Much of what he believes he says for ALL

patients. BUT each person's history is different. He wanted to push to have me

go on another drug but retracted his stance on this as long as I was responding.

He so much believes in quality of life and believed that once my system settled

down, and the dosage was TAILORED for my system, and after talking with Bobby,

we decided that not to " waste " as experience on another med since I probably

would have the same reactions.

There is a new BMS site for cmltracker.com https://www.cmltrackerlls.org/

Why did I bring this up? I would like everyone to look at this site which is

NOT a Gleevec site and see what their site says about the different drugs. At

this point, I do rest my case.

Hugs,

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