Dear Fran,
I haven't been on here in several days because we have been moving, and I
have 90 emails, soooo someone else may have already suggested this but just in
case, I have had problems with my feet hurting also when I was on gleevec, in
fact I developed a neuropathy in my left foot and toes (very painful, yet numb
to touch) one of the things that helped me a LOT was to take a warm moist rag
and wrap it around my foot then wrap a heating pad around it and sit with it
for 30 minutes or so several times a day. It relieved the pain quite well that
and Ibuprofen. Hope this helps and that Jon is doing better.
Hugs,
Katy
--
"The innocent and the beautiful have no enemy but time."
-William Butler Yeats
"Women and cats will do as they please, and men and dogs should relax and get
used
to the idea."
-Robert A. Heinlein
Katy
DX: 10/03
#677 in Zero Club
xanga.com/katybug45
-------------- Original message ----------------------
From: "franw/hope" <[EMAIL PROTECTED]>
>
> 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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