Hello again. I am on 400 gleevec. The onc took me off gleevec for one week to see if that would help and it didn't I asked if a week was long enough and he said yes but I think he was wrong. I havn't goten much infection because I clean them every nite and if needed put bandades on them. They also put me on an antibotic but didn't help. I will ask next month about the dosage of gleevec. Maybe 3-100 should be tried since I;am in remission and all counts are good. Take care and Happy New Year. JUDY dx99
Stacy <[EMAIL PROTECTED]> wrote:
Stacy <[EMAIL PROTECTED]> wrote:
Hi Judy,
ack! I really feel for you on that one, are you taking over the
counter potassium pills or dr rx potassium? Because I found that the
over the counter stuff doesn't work (I tried it a couple of times
when I was out of town and ran out of mine). I'm on one - two of the
dr rx potassium which are 20 meq er apiece.
I was seeing a local oncologist when I first got the blisters, and he
didn't know anything about them either. My University of Chicago onc
(who I've now switched to full time) is a little more knowledgable
about them, than the local onc was. The blisters went on for about
two-three months, which wasn't horrible, just annoying because I'd
have to change my socks every few hours. It wasn't until they got
infected in the last month that it was just a nightmare.
What got them to disappear, was a combo of a few things. First I was
sent to a wound care center, that specifically only deals with bad
wounds such as blisters and other wounds that won't go away. They
put special bandages on them that were like a cloth gel and super
wrapped them so they wouldn't hurt. Then I was put on a bunch of
oral antibiotics. Every day I would have to change those bandages,
which hurt like hell, but it got all the old skin off so the blisters
would heal. I was also given Vicoprofen (vicodin and ibuprofen mix
for the pain, because after they got infected, man did they hurt!).
I also had to keep my feet up on pillows at night in bed (which was
easy after the wound care center gave me the materials to wrap them
up, before sheets and stuff would only make the blisters worse) and
during the day I would have to sit with my feet elevated too (in a
recliner). I was also put on 80 mgs of lasix (taken 40mg when I
first get up, then 40mg after lunch when I take the gleevec), and the
potassium supplements. (I sometimes take an extra 40 mg pill at
night, if I am drinking more than usual after supper)
***** The main thing is that you need to visit a wound care center!
They will know how to better handle it. They deal with strange
wounds all the time, plus they can give you the appropriate
antibiotics and pain killers if you need it. I doubt it if your onc
has any clue to deal with them, as that extreme side effect is pretty
rare or at least that's what I was told. The pulmonary doctor that
pulled the 800cc's out of my lungs told me that the blisters were
rarer than a three dollar bill.
At any rate, I finally got rid of the blisters after a month of
wrapping them up, but if it wasn't for the doctors/surgeons at the
wound care center, I think I would have gone crazy from the insanity
those blisters gave me. But even now, I still have to make sure my
legs are elevated at all times and sleep with my feet up.
Good Luck in your quest to get rid of them! Hopefully if you get
these water blisters to go away your potassium problem will be
fixed. Ask your onc for the nearest wound care center asap! I'll
send some good thoughts your way. :)
Stacy
dx 8/03
PCRU 3/04 (although no HR because of slightly high platelets)
400 mg gleevec
--- In [email protected], judy <[EMAIL PROTECTED]> wrote:
> Hi Stacy. I have the water blisters also and very bad adema. What
did you put on yours. The Dr. gave me an antibotic because my legs
were so bad and cream I've tried about 6 kinds and that doesn't help
either. I'am on 2 different water pills and my potassium is so low
he's worried. I take 12 potassium pills a day I went up 50 lbs
because of the water but now have lost that but still can't lose any
more water. Take care and have a nice Merry Christmas. JUDY dx99
>
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