Re: Eyelid puffiness, rash from Gleevec

[Guest guest]

Vicky - I too had eye puffiness at the beginning...the Dr. told me to go on a

low sodium diet...not soda pop, french fries, and other salty foods...I did and

low and behold the puffiness went away...also you need to drink alot of water -

can't stress that enough and the water will help flush the Gleevec through your

system and those nasty side-effects with it...I'm surprised that your Dr. is

letting you continue on the drug when your skin is " coming off in sheets " - I

now have a rash on my face since starting exercise regimen - my Dr. says as long

as it's not peeling I can stay on Gleevec but as soon as that starts happening,

she's switching me to Sprycel...she's worried about infections when that

happens...

Hoping that these issues will resolve for you soon!

Cheryl

> >

> > Hi Vicki

> >

> > Rashes from Glivec

> >

> > They are part and parcel of a side effect from glivec

> >

> > Some people have no skin issues at all or others like myself became the

Queen of Rashes and competitions and one upmanship

> > who had the better rash.

> >

> > I started rashes within the first month of taking glivec (600mg) and

continued on with various types of rashes for just over 2 1/2 years

> > and it is only the last six months that the Rashes have completely

disappeared.

> >

> > I have had (read the list):

> >

> > Shingles repeatedly (a glivec side effect - if you get shingles get to

medicos asap so that they can get some medication into you asap)

> > - hives, welts, different types and size - blistering of skin - very small

blisters

> > - the best one - was a blood blister rash - all different sizes (that was

the only one that sent everyone being medicos and

> > family into a panic) -

> > Every couple of weeks another type of rash

> > Amazingly -

> > I did not get itchy skin - thank goodness just unsightly at times - good

conversation pieces and I was not sick with them.

> > Rashes only on legs, feet and arms - never face, or torso - shingles on

shoulder

> > I did not change drugs and I was able to manage the rashes quite easily

> >

> > I now do not wash with soap but with a sensitive skin lotion

> >

> > Many people - because of the rashes - which for them have been from head to

foot - thru the hair on face and terribly itchy

> > have swapped to another drug - not because glivec has not worked but for the

side effects. Having said that all CML drugs

> > have side effects just depends which one you are going to get and in what

severity or maybe so low grade that they do not

> > interfere with your quality of life.

> >

> > I am currently not even a rash Queen or rash Princess - so I am no longer in

the Rash Club.

> >

> > I one day woke up and thought I have not had a rash for a month then two

then three months - so now 6 months without

> > one - that I even forgot that I had rashes.

> >

> > Suggestion:

> > Ensure that you keep your specialist aware of your rashes or any side

effects such as being ill with them or if they suddenly

> > start to bleed or seep etc or as importantly your quality of life issues if

they are so bad.

> > As stated I had 2 1/2 years of rashes then they just went away - left with

as many others, very fragile skin, intolerant to the sun,

> > and going whiter until soon I maybe the ghost who walks.

> >

> > Sue (Aussie)

> >

> >

> >

> >

> > __________ Information from ESET NOD32 Antivirus, version of virus signature

database 4937 (20100311) __________

> >

> > The message was checked by ESET NOD32 Antivirus.

> >

> > http://www.eset.com

> >

> >

> >

> >

[Guest guest]

> Thanks so much for the info and encouragement--it really helps to know I'm not

the only one. My skin falls off in sheets--especially around my fingernails,

but also on my right arm, especially.

> On another subject, has anybody gotten anything either Rx or OTC (over the

counter) for their eyelid puffiness?

____________________________

Hi Vicki,

I have a couple suggestions to share.

Some of the cml specialists have suggested trying hemmorroid (?spelling)cream

for the eye puffiness....really. Because it shrinks small vessels that might

help with less swelling. I guess you would use it before going to bed. The other

suggestion is to put warm wet tea bags on them.....something with caffeine.

With Gleevec, you get what is called 'fragile' skin that tears easily. When I

was on 800mg Gleevec I could brush by a wall and literally wipe the skin off my

hand or arm where it rubbed. Eventually my skin got tougher....now I am off

Gleevec.

I do have one other thing that some my want to try. Basically I think those with

the skin problems may be detoxing through the skin? Long ago, another CMLer told

me about a detox bath, simply done.

You use 2 cups of epsom salt, 1 cup of baking soda and 1/4 cup of hydrogen

perioxide in the bath. I have used this many times over my cml years, like when

I had really itchy skin after I started Sprycel. In fact, it was so effective

(temporary) that sometimes I would soak in the tub twice a day.

I am about to start Tasigna (as soon as my blood tests and EKG are done) and I

hear people talking about a really itchy scalp. If this happens, I will make up

this bath water and lie back in the tub and soak my scalp. This combination

draws things out through the skin.

Hope some of this information is helpful.

C.

[Guest guest]

My daughter, Robyn, avoids eating food that has salt in it and lookds at the

sodium in all products before buying. By reducing the salt or sodium intake,

she hasn't had puffiness under her eyes. Try it.

sandi

>

> > Thanks so much for the info and encouragement--it really helps to know I'm

not the only one. My skin falls off in sheets--especially around my

fingernails, but also on my right arm, especially.

>

> > On another subject, has anybody gotten anything either Rx or OTC (over the

counter) for their eyelid puffiness?

> ____________________________

>

> Hi Vicki,

> I have a couple suggestions to share.

> Some of the cml specialists have suggested trying hemmorroid (?spelling)cream

for the eye puffiness....really. Because it shrinks small vessels that might

help with less swelling. I guess you would use it before going to bed. The other

suggestion is to put warm wet tea bags on them.....something with caffeine.

>

> With Gleevec, you get what is called 'fragile' skin that tears easily. When I

was on 800mg Gleevec I could brush by a wall and literally wipe the skin off my

hand or arm where it rubbed. Eventually my skin got tougher....now I am off

Gleevec.

>

> I do have one other thing that some my want to try. Basically I think those

with the skin problems may be detoxing through the skin? Long ago, another CMLer

told me about a detox bath, simply done.

>

> You use 2 cups of epsom salt, 1 cup of baking soda and 1/4 cup of hydrogen

perioxide in the bath. I have used this many times over my cml years, like when

I had really itchy skin after I started Sprycel. In fact, it was so effective

(temporary) that sometimes I would soak in the tub twice a day.

>

> I am about to start Tasigna (as soon as my blood tests and EKG are done) and I

hear people talking about a really itchy scalp. If this happens, I will make up

this bath water and lie back in the tub and soak my scalp. This combination

draws things out through the skin.

>

> Hope some of this information is helpful.

> C.

>

[Guest guest]

I will surely keep this email and the recipe for that bath remedy!

On Thu, Mar 18, 2010 at 10:26 AM, Sandy <sandi3533@...> wrote:

>

>

> My daughter, Robyn, avoids eating food that has salt in it and lookds at

> the sodium in all products before buying. By reducing the salt or sodium

> intake, she hasn't had puffiness under her eyes. Try it.

> sandi

>

>

> >

> > > Thanks so much for the info and encouragement--it really helps to know

> I'm not the only one. My skin falls off in sheets--especially around my

> fingernails, but also on my right arm, especially.

> >

> > > On another subject, has anybody gotten anything either Rx or OTC (over

> the counter) for their eyelid puffiness?

> > ____________________________

> >

> > Hi Vicki,

> > I have a couple suggestions to share.

> > Some of the cml specialists have suggested trying hemmorroid

> (?spelling)cream for the eye puffiness....really. Because it shrinks small

> vessels that might help with less swelling. I guess you would use it before

> going to bed. The other suggestion is to put warm wet tea bags on

> them.....something with caffeine.

> >

> > With Gleevec, you get what is called 'fragile' skin that tears easily.

> When I was on 800mg Gleevec I could brush by a wall and literally wipe the

> skin off my hand or arm where it rubbed. Eventually my skin got

> tougher....now I am off Gleevec.

> >

> > I do have one other thing that some my want to try. Basically I think

> those with the skin problems may be detoxing through the skin? Long ago,

> another CMLer told me about a detox bath, simply done.

> >

> > You use 2 cups of epsom salt, 1 cup of baking soda and 1/4 cup of

> hydrogen perioxide in the bath. I have used this many times over my cml

> years, like when I had really itchy skin after I started Sprycel. In fact,

> it was so effective (temporary) that sometimes I would soak in the tub twice

> a day.

> >

> > I am about to start Tasigna (as soon as my blood tests and EKG are done)

> and I hear people talking about a really itchy scalp. If this happens, I

> will make up this bath water and lie back in the tub and soak my scalp. This

> combination draws things out through the skin.

> >

> > Hope some of this information is helpful.

> > C.

> >

>

>

>

[Guest guest]

>

> I will surely keep this email and the recipe for that bath remedy!

>

>

_____________________

Hi ,

It was Norma Biddleman, who the old timers will remember, who gave me that bath

recipe years ago. It seems to lift the itch right off your skin and gives relief

for several/many hours. You can buy bath detox products but they are spendy.

Also, if you have a Costco, you can get large bags of the products used and it

is cheaper that way.

C.

[Guest guest]

Could you post the recipe for the bath detox, I must have missed it. Thanks

Eva

From: hey00nanc

Sent: Thursday, March 18, 2010 3:17 PM

Subject: [ ] Re: Eyelid puffiness, rash from Gleevec

>

> I will surely keep this email and the recipe for that bath remedy!

>

>

_____________________

Hi ,

It was Norma Biddleman, who the old timers will remember, who gave me that bath

recipe years ago. It seems to lift the itch right off your skin and gives relief

for several/many hours. You can buy bath detox products but they are spendy.

Also, if you have a Costco, you can get large bags of the products used and it

is cheaper that way.

C.