Robyn - Spinal Pain - Hi I am new Here

[Guest guest]

Good Morning Robyn

Nearly all CMlers have pain when first introduced to glivec (the drug is

working) which is a different pain which you may have had prior to being

diagnosed.

My experience - Bone Ache then there is bone Pain of you can believe that.

I had pains and aches in long limbs, specific not all the limb, pain in joints

at times, pain in hips, deep into the large joints and yes

lower back and low spinal deep aches that I could hardly walk at times. The

deep aches last as long as they do - pains only a couple of days

at a time. These side effects lasted many months (1 year at the minimum). Like

everything they come and go.

You may also experience muscle cramps at sametime

This is between all the other side effects that I experienced and new ones come

every month or so even though continuing to be PCRU.

I must admit spinal pain was a doosey.

Try heat packs, heat bandages, hot water bottles, and I found relief by just

walking thru the dull aches in my back and deep pain in hips- this event lasted

about 5 weeks off and on, rest when you feel you should. I found a great

bandage that had a gel in it from the chemist - you put it on like a bandaid and

it warms the back for 8 hours at a time - you cannot wear to bed or when resting

though - worked a treat.

If you are not getting any relief then you may have to have some medical

support.

The pains do go away in time so it is not a lifetime everyday problem

Suggestion

Your responsibility is to advise your specialist of any side effects such as

spinal pain and lesser evils.

Your medical team cannot support you if they do not know what you are going

thru. They are their to help you.

Establish a good working relationship with your communical doctors and your

specialist medical team as you have a chronic disease

that can be managed.

Just keep calm - enjoy your each day - eat well and have a balanced life

Fatigue

That is one of CML treasures

After awhile it becomes like an energy bank

You deposit good food, rest, balanced of life - and if you do too much their is

a withdrawal

My specialist at one time told me - that it is like a marathon everyday for your

blood to do its work so no wonder one is fatigued.

Rest up - some people are more fatigued than others - at one time I slept 2 days

straight only waking to go to the loo or drink water.

Months of sleeping hours on the couch - thought I would just watch this program

on TV sound asleep -

It does get better as your levels go down south - If your fatigue gets worse -

contact your specialist.

Keep well as you are able

Sue (Aussie)

[Guest guest]

Sue- thank you so much for sharing your experience. I'm glad to hear it may go

away in time:) I love my heat pad, it's one of my best friends. I had back

surgery in 2001 so it's hard to tell where the pain is coming from, is it the

back from surgery? Leukemia? Gleevec? Yesterday and today are better. I went to

work yesterday and made it through to the end of the day so I feel more normal

again. Last Monday I slept so many hrs. I'm embarassed to say. I like your

" energy bank " analogy so I will carry those suggestions with me.

Robin

Dx: 2/12/2009

>

> Good Morning Robyn

>

> Nearly all CMlers have pain when first introduced to glivec (the drug is

working) which is a different pain which you may have had prior to being

> diagnosed.

>

> My experience - Bone Ache then there is bone Pain of you can believe that.

>

> I had pains and aches in long limbs, specific not all the limb, pain in joints

at times, pain in hips, deep into the large joints and yes

> lower back and low spinal deep aches that I could hardly walk at times. The

deep aches last as long as they do - pains only a couple of days

> at a time. These side effects lasted many months (1 year at the minimum).

Like everything they come and go.

>

> You may also experience muscle cramps at sametime

>

> This is between all the other side effects that I experienced and new ones

come every month or so even though continuing to be PCRU.

> I must admit spinal pain was a doosey.

>

> Try heat packs, heat bandages, hot water bottles, and I found relief by just

walking thru the dull aches in my back and deep pain in hips- this event lasted

about 5 weeks off and on, rest when you feel you should. I found a great

bandage that had a gel in it from the chemist - you put it on like a bandaid and

it warms the back for 8 hours at a time - you cannot wear to bed or when resting

though - worked a treat.

>

> If you are not getting any relief then you may have to have some medical

support.

>

> The pains do go away in time so it is not a lifetime everyday problem

>

> Suggestion

> Your responsibility is to advise your specialist of any side effects such as

spinal pain and lesser evils.

>

> Your medical team cannot support you if they do not know what you are going

thru. They are their to help you.

>

> Establish a good working relationship with your communical doctors and your

specialist medical team as you have a chronic disease

> that can be managed.

>

> Just keep calm - enjoy your each day - eat well and have a balanced life

>

> Fatigue

> That is one of CML treasures

> After awhile it becomes like an energy bank

> You deposit good food, rest, balanced of life - and if you do too much their

is a withdrawal

> My specialist at one time told me - that it is like a marathon everyday for

your blood to do its work so no wonder one is fatigued.

> Rest up - some people are more fatigued than others - at one time I slept 2

days straight only waking to go to the loo or drink water.

> Months of sleeping hours on the couch - thought I would just watch this

program on TV sound asleep -

>

> It does get better as your levels go down south - If your fatigue gets worse -

contact your specialist.

>

> Keep well as you are able

>

> Sue (Aussie)

>

>

>