Hi Group, For those that have followed our Jonathan, I thought I would share our good news. Doc has finally agreed to lower Jon's dosage of Gleevec from 600mg to 400mg. It has been 4 wks now and we are going back every 2 weeks for counts and PCR. Jon is holding. We have written back and forth a few times with Dr. Druker concerning Jon's growth and weight not increasing since his dx. His conclusion was that Jon was on an extremely high dose and also that he has no reportings that growth was this slow for other children. Endocrinologist checks were great. Although the Endo does not feel comfortable with any growth hormone supplications for Jon. So it is a question for all the doc's why this is going on. Although since we have lowered his dosage, I have knowtest his appetite slowly increasing. So with time...here's hoping.. and maybe even soon we can lower the dosage again to what he is suppose to have for his height and weight. He is 4'11 1/4 and weighs 70 lbs. Jonathan's feet have been hurting though alot more than usual. Seems like he's always wanting to soak them and let the water run over them in the tub. The water is to hot I think.. so that is a sign that other alternatives need to be tried. I would think it would be less miserable for him on a lower dosage. But it seemed to had started a week after the lower dosage was started. He's always had feet problems...but not as often and not for so long of periods. Getting complicated. Suggestions are great !! Blessings fran Jonathan dx 10/2003 age 9 600mg until 11/06 now 400 mg PCR 13/100k
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