Dear Karen,
I sympathize with your symptoms. I too have a rash on my leg. At first on Gleevec, it was scattered and sporadic and over the body, my arms, legs, hands, and some on my back. Some of them burst and the water came out, causing a scab. At first my oncologist said to get them biopsied. A dermatologist did and of course, found nothing. He did tell me that there is a condition that can occur on the skin, due to medicine reactions and he called it a big long name and told me it would not kill me. The blistered bumps continued off and on and finally, one large area on my lower right leg, the front part from my ankle up half way to my knee, seems to be the spot it settled. At one point, the entire mess healed. Now, from time to time, it reoccurs and spreads a little, itches a lot and I have found vitamin E to be the best solution for me. The bumps at this point do not get water in them anymore. But my leg looks like I have been burnt and scared.
I have not had cold sores at all since taking Gleevec.
Regarding the bumps and scrapes, I am with you on that one. I must be SO careful. Even if I bump against a wall, my arm or knee scraping the wall for just a short time, my skin rolls off and the injury bleeds and is difficult to stop. I used to scrap my arm putting my arm through an opening in a blouse or dress….. can you believe it? It takes FOREVER to heal from those scrapes. It happens to me all the time. My doctor says that my blood work always shows a tad of anemia and I suspect that is why it takes so long to heal. My skin is NOT the same as pre-gleevec. It has definitely changed. I have almost no pigmentation at all, and it takes a goodly amount of makeup for me to look good for work each day. I used to have a birthmark, a dark brown figure on my upper leg. It has totally disappeared. Good thing I am Anglo – I have the white Scottish/Irish heritage and so I can wear the lack of pigmentation better than some of our darker skinned friends.
I hope this was helpful.
Barry: I asked my oncologist about drinking wine. He said an occasional glass was okay. I think that the worry is overworking your liver – which Gleevec already does. I have a glass of wine on the weekends with a meal and my liver counts remain low: AST at 21 and ALT at 25. I do watch them though.
On being cold: ALL THE TIME, EVERY DAY, ALL DAY LONG, ALL NIGHT LONG AND NEVER CAN GET WARM!!!! The kids at school where I teach make fun of the sweaters, coats and leggings I wear in class – because I live in Arizona, you would think it is the best place to be warm????
Barb Stanley in Arizona, age 53
Diagnosed 5/5/02
Gleevec 6/11/02
PCRU 3/17/03
Hi all
Since I started the rad trial, many of the initial gleevec side
effects I had 3 years ago (bone pain, really bad edema, total loss of
taste...) are coming back. (I'm optimistically hoping this is a good
sign!). Anyway, a few days ago I developed a rash on my hands,
wrists and feet. I am wondering if its from the gleevec. I do
remember getting a rash initially with gleevec, but can't recall what
it looks like. For those of you that have had a rash caused by
gleevec, does it look like poison ivy? Mine is lots of tiny raised
bumps, some that seem filled with water... It itches like crazy, but
the aveeno anti-itch seems to help. The worst is on the bottoms of my
feet which makes it hard to walk!
Also, I know that initially when I started gleevec 3 years ago, I got
cold sores early on, but then never got them again. This time I
have them and they are so bad I can hardly eat or talk. I have 6 of
them and 2 of them are about the size of a penny. Is one of the
gleevec side effect cold sores? Last time I recall that they lasted
for a few days, but its now been 2 weeks and I'm getting tired of
living on soup and drinks thru a straw!!! The doctor did give me
lidocane, but unfortunately it does nothing to help them get better
and the relief is so short lived that its not even worth the effort.
Any recomendations of any OTC stuff that works for cold sores?
Lastly, I have noticed that recently I am getting more cuts and
scrapes. If I bang into the littlest thing, it results in a major
ugly sore (with bleeding) and takes weeks to go away... A couple
days ago, I was putting a book away and it fell on my nose, and
resulted in a 4 inch bloody gouge on my face. It looked so bad that
people thought I was in a car accident or something. Has this
happened to others? Does anyone know what caused this? cml? gleevec?
high platlets, wbc dropping??????
Thanks for any thought people have on these questions....
-karen in MA
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