Re: Gleevec and Skin - unfair comments

[Guest guest]

I have been very interested to read all the notes and stories over this

topic.

Glivec affects us all in different ways. I have been on 800mg since

diagnoses and work from home. It's extremely tiring and my husband is still

pushing for me to return back to work on a semi-full time basis but I know

that I wouldn't physically be able to do it. I have fatigue, memory loss

(lack of concentration) and a constant tiredness. This is alongside the

physical side effects.

I was a bit disappointed when I put my posting about the way it has affected

my skin, hair and freckles from the comments about a few of us being

'chickens running around'. This comment was somewhat unfair. We are all in

the same boat to a point and yet on a day-to-day basis we are all alone and

fighting. We are classed as 'chickens running around' because a woman makes

a comment about her appearance? I certainly don't want to end up looking

like a shriveled old piece of nothing with no colour. The lady who made the

original comment about her appearance cares about the way she looks and

quite rightly so! I have met up with a couple of women here in Melbourne

who have made the same comment about their skin drying out.

Fair type I skin with red hair and freckles meant take care in the sun

before I was diagnosed with CML let alone now! Before diagnosis I used to

turn a lovely coppery brown. Now even if I spend 10 minutes in the 4pm sun

I burn. I accept it and that's not a whinge but a comment. People with

type II skin or darker stand a better chance of a bit of colour, even on

Glivec.

These issues are not a whinge but an issue put forward to a so-called

'support group'. Is it any different to people complaining about diarrhea,

watery eyes, bone pain and the such? I don't think so. If so, then all of

our comments are nothing but constant whinges. I won't start about numerous

and ever increasing huge scars on my shins due to my skin constantly tearing

off for no reason.

I am truly, truly grateful for the 3+ log reduction that Glivec has given me

because without that I dread to think where I would be now ...

My husband can be a bit non-supportive as he tends to push this illness

'under the carpet'. He hasn't got a clue how my bloods stand and certainly

isn't educated on the illness. I wish he was. His idea of being supportive

is to live life and forget about the disease. Is this possible with anyone

out there? I don't feel sorry for myself however I do succumb to the

fatigue and tiredness, I don't have any choice. I also wonder if the

tiredness and fatigue is nature's way of telling the body to slow down and

'heal'.

Jackie

[Guest guest]

At 05:01 PM 2/10/07 +1100, you wrote:

> His idea of being supportive

>is to live life and forget about the disease. Is this possible with anyone

>out there? I don't feel sorry for myself however I do succumb to the

>fatigue and tiredness, I don't have any choice. I also wonder if the

>tiredness and fatigue is nature's way of telling the body to slow down and

>'heal'.

Hi Jackie,

I did not follow the whole thread, so I don't know about what comments were

made. But in your case, I am wondering why you started at 800mg since

dx....and whether you might be able to lower your dose. If your disease is

well controlled, others have done this. Most people have more side effects

with 800mg and 400 is usually more tolerable.

I have Native American background from both parents.....and used to get a

wonderful tan when I go to Maui.....not the last time, when on 800mg. I

fried....any spot that did not have sunscreen. I am now getting ready for a

Caribbean cruise.......and have realized that I will probably need to have

fun outside of the sun.......but I am also going to look at UV protection

clothing for this trip. Anyone interested, look at

www.sundayafternoons.com they have some great sun hats and clothing.

Also, I recently discovered emu oil for dry skin and scalp and it is really

good stuff. You can goggle and find companies for this. It is documented to

penetrate the skin better and also heals the skin. This might help you.

Some people do have few or even no side effects from their dose of

Gleevec.......and others have many to deal with. The name of the game is

survival.....and you do what you have to to live with CML and your treatment.

C.

[Guest guest]

Jackie

The comment about chickens, was not meant for you I believe-it was

about a different topic. I am sorry if you were offended by the

comment that was made, but do not believe that it was about your

situation-it was about whether Gleevec was indeed chemo or not.

--- In , " Jackie Petropoulos " <blueshar@...>

wrote:

>

> I have been very interested to read all the notes and stories over

this

> topic.

>

>

>

> Glivec affects us all in different ways. I have been on 800mg since

> diagnoses and work from home. It's extremely tiring and my husband

is still

> pushing for me to return back to work on a semi-full time basis but

I know

> that I wouldn't physically be able to do it. I have fatigue,

memory loss

> (lack of concentration) and a constant tiredness. This is

alongside the

> physical side effects.

>

>

>

> I was a bit disappointed when I put my posting about the way it has

affected

> my skin, hair and freckles from the comments about a few of us being

> 'chickens running around'. This comment was somewhat unfair. We

are all in

> the same boat to a point and yet on a day-to-day basis we are all

alone and

> fighting. We are classed as 'chickens running around' because a

woman makes

> a comment about her appearance? I certainly don't want to end up

looking

> like a shriveled old piece of nothing with no colour. The lady who

made the

> original comment about her appearance cares about the way she looks

and

> quite rightly so! I have met up with a couple of women here in

Melbourne

> who have made the same comment about their skin drying out.

>

>

>

> Fair type I skin with red hair and freckles meant take care in the

sun

> before I was diagnosed with CML let alone now! Before diagnosis I

used to

> turn a lovely coppery brown. Now even if I spend 10 minutes in the

4pm sun

> I burn. I accept it and that's not a whinge but a comment. People

with

> type II skin or darker stand a better chance of a bit of colour,

even on

> Glivec.

>

>

>

> These issues are not a whinge but an issue put forward to a so-

called

> 'support group'. Is it any different to people complaining about

diarrhea,

> watery eyes, bone pain and the such? I don't think so. If so,

then all of

> our comments are nothing but constant whinges. I won't start about

numerous

> and ever increasing huge scars on my shins due to my skin

constantly tearing

> off for no reason.

>

>

>

> I am truly, truly grateful for the 3+ log reduction that Glivec has

given me

> because without that I dread to think where I would be now ...

>

>

>

> My husband can be a bit non-supportive as he tends to push this

illness

> 'under the carpet'. He hasn't got a clue how my bloods stand and

certainly

> isn't educated on the illness. I wish he was. His idea of being

supportive

> is to live life and forget about the disease. Is this possible

with anyone

> out there? I don't feel sorry for myself however I do succumb to

the

> fatigue and tiredness, I don't have any choice. I also wonder if

the

> tiredness and fatigue is nature's way of telling the body to slow

down and

> 'heal'.

>

>

>

> Jackie

>

>

>

>

[Guest guest]

Jackie,

The comments about chickens was that everybody was

worried about ruffling each others feathers in the

debate on gleevec being a Chemo therapy vs not a chemo

therapy.

I was trying to make a light comment on the debate. I

did so because I hate seeing people get too worked up

in a debate.

Sorry if my reference/joke put you off. Indeed I

have been lucky and had very little side effects. 99

out of 100 hundred of my thoughts and experiences are

on the joys and challenges of every day life rather

than my CML. I celebrate the fact that Gleevec has

allowed me to be that way over the past 3.5 years!

BTW if anything the Gleevec may accelerate my hair

loss - but it was coming anyway! So if you do lose

any feathers please send them my way to cover my scalp

when the sun is shining!

Be good!

Chris

--- sassysus06 <no_reply > wrote:

>

> Jackie

>

> The comment about chickens, was not meant for you I

> believe-it was

> about a different topic. I am sorry if you were

> offended by the

> comment that was made, but do not believe that it

> was about your

> situation-it was about whether Gleevec was indeed

> chemo or not.

>

>

>

>

>

>

> >

> > I have been very interested to read all the notes

> and stories over

> this

> > topic.

> >

> >

> >

> > Glivec affects us all in different ways. I have

> been on 800mg since

> > diagnoses and work from home. It's extremely

> tiring and my husband

> is still

> > pushing for me to return back to work on a

> semi-full time basis but

> I know

> > that I wouldn't physically be able to do it. I

> have fatigue,

> memory loss

> > (lack of concentration) and a constant tiredness.

> This is

> alongside the

> > physical side effects.

> >

> >

> >

> > I was a bit disappointed when I put my posting

> about the way it has

> affected

> > my skin, hair and freckles from the comments about

> a few of us being

> > 'chickens running around'. This comment was

> somewhat unfair. We

> are all in

> > the same boat to a point and yet on a day-to-day

> basis we are all

> alone and

> > fighting. We are classed as 'chickens running

> around' because a

> woman makes

> > a comment about her appearance? I certainly don't

> want to end up

> looking

> > like a shriveled old piece of nothing with no

> colour. The lady who

> made the

> > original comment about her appearance cares about

> the way she looks

> and

> > quite rightly so! I have met up with a couple of

> women here in

> Melbourne

> > who have made the same comment about their skin

> drying out.

> >

> >

> >

> > Fair type I skin with red hair and freckles meant

> take care in the

> sun

> > before I was diagnosed with CML let alone now!

> Before diagnosis I

> used to

> > turn a lovely coppery brown. Now even if I spend

> 10 minutes in the

> 4pm sun

> > I burn. I accept it and that's not a whinge but a

> comment. People

> with

> > type II skin or darker stand a better chance of a

> bit of colour,

> even on

> > Glivec.

> >

> >

> >

> > These issues are not a whinge but an issue put

> forward to a so-

> called

> > 'support group'. Is it any different to people

> complaining about

> diarrhea,

> > watery eyes, bone pain and the such? I don't

> think so. If so,

> then all of

> > our comments are nothing but constant whinges. I

> won't start about

> numerous

> > and ever increasing huge scars on my shins due to

> my skin

> constantly tearing

> > off for no reason.

> >

> >

> >

> > I am truly, truly grateful for the 3+ log

> reduction that Glivec has

> given me

> > because without that I dread to think where I

> would be now ...

> >

> >

> >

> > My husband can be a bit non-supportive as he tends

> to push this

> illness

> > 'under the carpet'. He hasn't got a clue how my

> bloods stand and

> certainly

> > isn't educated on the illness. I wish he was.

> His idea of being

> supportive

> > is to live life and forget about the disease. Is

> this possible

> with anyone

> > out there? I don't feel sorry for myself however

> I do succumb to

> the

> > fatigue and tiredness, I don't have any choice. I

> also wonder if

> the

> > tiredness and fatigue is nature's way of telling

> the body to slow

> down and

> > 'heal'.

> >

> >

> >

> > Jackie

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

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