I think it is a very wise decision to lower his dosage. My daughter is 11, weighs 65 pounds and is 4' 5. She takes 350 mg of Gleevec. Dr. Druker tells us that this is equivalent to a 600 mg adult dose for a child her size. 600 mg appears to me to be a very high dose for a child Jon's size, particularly if he was diagnosed in chronic phase. My daughter's growth has clearly slowed since she started Gleevec, but I am pleased that she is still growing steadily. Some have suggested that Gleevec delays puberty. Thus, I am hoping that my daughter's growth is being delayed rather than impeded..
My prayers are with Jon. I hope the lowered dosage will help both with the growth issues and the foot pain.
Lisa
Rob wrote on 12/4/2006, 12:56 AM:
It is good to hear they will lower the dosage.
Rob
On 12/3/06, franw/hope <[EMAIL PROTECTED]> wrote:
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
http://neworleansemail.com
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