I was wondering your experiences:
I have gone off glivec for 14 days due to surgery
and have just returned to my low dose of 400mg for 2 weeks
and then the following 2 weeks will go on my 600mg dose.
While not on glivec - I was little concerned due to
wondering if I would have a blast or white cells increasing etc
but this did not happen.
Has anyone experienced any adverse impacts from going off glivec and then resuming doses.
Sue
Hi
I have recently had a week long break from taking 400mg Glivec due to side effects. My recent test showed my blood count was about the same as my previous test, prior to the break. I am now on a reduced dose of 200mg. So , no adverse effects.
hope your op went well !
Bill Yellowley
Hi I have just reread my reply posted on the 18th.I should clarify that the reduced dose I was on was only a temporary measure. I will be steadily increasing the dose over a period of months till I get back to 400 a day in an effort to avoid side effects. So far I am feeling very tired and the bone / muscle pain is very mild.
Did you have any adverse effects Sue ?
Bill Yellowley
Bill
Glivec
I was orignally when first diagnosed on 100mg then to 200mg then to 400mg then to 600mg over a small period of time.
100mg a doddle - no problems at all but even at such a small amount bloods responding to glivec
(2 weeks only)
200mg - what a disaster
Had terrible side effects
shingles - non ithcy hives - bone pain at times - vomiting - quessiness - unsettled sleep as I was fatigued most of the day - terrible "D"s (runs at times)
(I was only on 200mg for 2 weeks - and glad that dose was over - so was very apprehensive when I went onto the 400mg dose )
400mg - not a problem compared to the 200mg
Then started at times to have small side effects
Taste
taste changed at times - had a metallic taste
Could not stomach milk products with full milk so had to
have reduced milk only once per day
Could not tolerate cups of tea (herbal or otherwise)
Hormonal
Started to have period problems (as discussed previously)
Fatigued at times
Shingles at times
Just a little queasy
At times vomited after taking medication and
other times just felt not myself
600mg
Well different again
Cramps
Main culprit on 600mg for me is the eye odeama (which is constant) and some weight gain.
I am on a salt skip program having reduced sodium so that I do
not have to have diurectics.
www.saltmatters.org (great site)
www.megaheart.com (or org) cannot remember for recipes
In hospital
Break from 600mg for 14 days
Lost weight - actually got my own face back
eyelids and cheekbones
Had 400mg for 2 weeks
(no side effects at all - fantastic)
A clinical dietician visted me in hospital and we went thru
my diet and glivec reaction of quezziness and metallic taste.
Suggested that I eat more protein in my diet.
Also the meal that I have glivec (in my case breakfast)
to have more carbohydrate food. For every mg of medication take 1 ml of water. For me this has worked.
Note: I always make sure I do not sit around or lay down after glivec because that caused me to feel not so good - so always go for a walk and make sure I am up and about at least 3/4 - 1 hour before I take medication. My hint Bill.
Has been really a side effect free two weeks.
One positive side effect - Hormones again - night sweats stopped 3 days after starting glivec.
Back on 600mg (Take full amount at breakfast)
Did not take long - my constant bug bear.
Eye odeama already and some weight gain - not much
No quezziness - vomiting - or any "D"-runs
So back on track - time will tell if these are the only side effects but compared with previously - very minimal
Hope that helps Bill
Sue
I have always took my Glivec after my evening meal with a large glass of water followed by a short walk with the dog ! I am currently taking 300 / 200 on alternate days and have been amazed how I can feel the difference compared to the 200 a day I was on for 3 weeks which gave me no problems at all. (following my drug holiday due to side effects). I am getting mild pain in some muscles normally only on the day after I have been quite active. I will be upping the dose in a couple of weeks and am feeling optomistic about it.
Sue I dont know if you have used the link on this page to the section about 'What could have caused me to develop CML' but I added some background stuff about my situation there the other day. I was wondering if you, or anyone else, had any similar experiences. I dont know if that part of the site is viewed as much as this forum... maybe I should repeat it here.
Hope you settle into the new dose soon.
Bill
Bill
Just read your posting of reasons for CML.
At the first of my diagnosis I wondered how did I get this condition - I think that is a normal reaction,
However, I have racked my brains and no apparent reason - just the luck of the draw.
As many reasons as none reasons.
Live on a small acreage with horses etc.
Is it some of the vet products that are used.
Was it the oil in the fencing - meaning we oil the fences.
Had a new farm shed erected - had the flooring and areas white ant treated.
Each year spray for white ants and spiders around the property.
We have ground water - not scheme water - is it something in the water.
Is it not from my home environment but that of my work environment - Sick office building.
I had a large number of MRI's / CAT scans / X-Rays for anohter condition - could that have contributed.
If that is the case - you would think there would of been a spike of the same condition thru the region - but no - just me.
So now days - do not even think of the reason why - just deal with the realities of the management of the condition.
However it is the side effects of the medication that cause me more angst then how did I get this condition.
Keep Well and good health, Bill
Will let you know how I go with the next dose (hopefully only stay on 600mg)
Cheers
Sue
