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Nigel

Dear Nigel,

apologies for the broken link on the Contact Us page- I will contact Roger (our tech guy) and ask him to udate the link.

 

Meanwhile, if you use cmlsupportgroup@gmail.com this will ensure that any message you send will be delivered to me. I have updated the About Us/contact address page with this and other details.

Re: navigating to the forum page - I hope that is your question? 

 

after logging in at www.cmlsupport.org.uk you should be taken to the Home page ... click on 'Forum' which is second down on the main menu and you should arrive here. 

 

I hope this is what you asked?

 

Re: side effects. 

A. you might not experience any

but will probably find that you get leg aches or cramps/ restless legs. This effect disappears within the first 12 weeks but it can be troublesome at first. Keep your muscles warm and do stretching excercise if you can. Drink LOTS of plain water (extra to your normal fluid intake).

 

Nausea is also a common side effect but his is easily dealt with: Always take imatinib on a full stomach- during or immediately after the largest meal of the day- again with a large glass of water.

 

You might feel more tired than usual- just go with it and don't push yourself to hard. I always took imatinib after dinner so when I felt an overwhelming desire to sleep it was time to go to bed anyway.  Your body will get used to the drug and these effects will diminish over time. 

 

I hope this helps,

Best wishes,

Sandy

 

 

Hi Sandy,

You mentioned in the first note above re leg cramps etc, i have had these a few days now, not very nice. Do they come and go in the say 12 weeks you mention, realise different timings for each person, or are they in most peoples experience there the whole time ?

Thanks Nigel

Hi Nigel,
I had the leg cramps also they didn't appear until my 4th week into treatment and only lasted 3 weeks. I suppose we are all different but it will pass. I found walking helped and was more aware of them when I was sitting! Hot baths also were good! Hope you don't have to endure them too long!
Lynne

Hi all,

Posting this for others for the future, i have found one ibuprofen tablet with breakfast makes a massive difference for the whole day.

Nigel

Just my own experience with cramps.  2 1/2 years on Glivec and I still get cramps. In the feet, legs (occasionally), hands, neck and back. They are minor and not constant - a bit like when you overstretch yourself, and get a cramp, it just seems to take a bit longer to go away now, and they come on more easily than they did.  Sometimes, when performing the essential task of removing the cork from a bottle of wine, my hand will cramp on the corkscrew meaning I can remove the cork from the bottle but not the corkscrew from my hand! Much to the amusement of those around me! They always resolve themselves and I don't feel I need to take anything for them - in my first few months I did get a neck cramp that lasted a week and was painful, for which I did take ibuprofen, but now they fade away in a few minutes.

Generally my experience with side effects is mine are minor and manageable - the only thing I still do is take (low dose) omeprazole for indigestion.  I was a bit prone to that before Glivec and it got much worse on it - but omeprazole is brilliant for it. 

Richard

Hi Nigel

 

I've been on Glivec 400 for 26 months now and had real trouble with cramps up till early this summer. By far the worst was in

the neck ( pain in the neck?) which lasted on and off for a year and when it started had me rolling on the floor in agony. I also got cramp in my feet when swimming.

Are you by any chance on statins? I found that my cramps got so much better once I stopped taking the statins.

Best wishes

Chrissie

Thanks for the note Chrissie, no i am not on statins that i know of, legs have got alot better over the past week, so fingures crossed they stay that well.

Nigel