Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 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, Quote Link to comment Share on other sites More sharing options...
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