Basil :Thanks for the warm welcome!

[Guest guest]

Good Morning Basil

Welcome to the group

Like South Africa, Australia has only a small group of people with CML -

something like 200 - 350 per year diagnosed compared to outher types

of Leukaemias.

Like yourself, I too suffer terribly from eye oedemia and puffy face.

I at times also have a watery left eye, so now do not wear make-up as I never

know when the

water eye attack will take place.

Over the period of time on glivec I have had short term side effects so

hopefully these have all

stopped.

I am on a Salt Skip Program so that I do not have to use diuretics for the water

retention I still store water

retention weight - so imagine how big I would be if not on this program as I

have some weight gain from glivec.

Low sodium eating. www.saltmatters.org

I have had 14 days off from glivec (Australia spelling) - due to emergency

surgery.

What a difference no glivec taking makes.

You actually feel like yourself, and within days, had lost heaps of weight,

eyelids and face back to normal

with actual eyelids and cheekbones plus all the energy that I now have even

recuperating from the operation.

I have returned to taking glivec - 600mg - first 2 weeks on 400mg and then

returning to my normal dose.

I have been on the 600mg for two days - and amazingly - my eyelids are already

starting to puff. What a drag.

Just a visual problem of body image but the glivec face is not me and you

actually forget what your

normal face should be until it returns.

Glad to chat Basil - speak soon

Sue

(Australia)

[Guest guest]

Hi Sue,

And a hearty welcome to you.

You did not say how long you have been on Gleevec, but from my experience the

side effects gradually diminish, but do no disappear completely.

I used to suffer from a lot of eye bleeds, but thankfully that has stopped now.

I must say that apart from puffy eyelids and the occasional upset tummy, I feel

great.

I have been on Gleevec for about 4.5 years now and I am currently on 400 mg per

day.

I do take Diuretics daily and this assists in keeping the water retension at

bay. The main problem with water retension is that there can be a buildup in the

lungs as well as around the heart.

My weight is pretty constant but dependant on food and beer intake. haha!

Well I guess you may have noticed that Australia is becoming a little South

Africa now with the current exit of SA citizens emigrating to greener pastures.

Thanks for the welcome

Basil

[ ] Basil :Thanks for the warm welcome!

Good Morning Basil

Welcome to the group

Like South Africa, Australia has only a small group of people with CML -

something like 200 - 350 per year diagnosed compared to outher types

of Leukaemias.

Like yourself, I too suffer terribly from eye oedemia and puffy face.

I at times also have a watery left eye, so now do not wear make-up as I never

know when the

water eye attack will take place.

Over the period of time on glivec I have had short term side effects so

hopefully these have all

stopped.

I am on a Salt Skip Program so that I do not have to use diuretics for the

water retention I still store water

retention weight - so imagine how big I would be if not on this program as I

have some weight gain from glivec.

Low sodium eating. www.saltmatters.org

I have had 14 days off from glivec (Australia spelling) - due to emergency

surgery.

What a difference no glivec taking makes.

You actually feel like yourself, and within days, had lost heaps of weight,

eyelids and face back to normal

with actual eyelids and cheekbones plus all the energy that I now have even

recuperating from the operation.

I have returned to taking glivec - 600mg - first 2 weeks on 400mg and then

returning to my normal dose.

I have been on the 600mg for two days - and amazingly - my eyelids are already

starting to puff. What a drag.

Just a visual problem of body image but the glivec face is not me and you

actually forget what your

normal face should be until it returns.

Glad to chat Basil - speak soon

Sue

(Australia)