Hi, I was on 400mg and then 800 mg Glivec (I'm in the UK), and I had some of the side effects you mention, and I do sympathise with you. Diarrhoea - I used to get it worse late evening/early night-time, and these bouts lasted for an hour or two. I tried to analyse what I'd eaten which may have caused it, and the only conclusions I came to where that it was coffee and anything which contained yeast. I cut out both and it seemed to ease the situation, but didn't cure it. I then found that rye bread, and anything with highly refined flour in, made it worse. Wholewheat soda bread seemed to be OK, but caused flatulence. It was suggested that a diet where I didn't mix carbohydrate and protein in the same meal might help and it did, but didn't cure it. Cramps - I tried quinine, but that didn't seem to do much good and there were side effects from them, so I tried calcium tablets, and that did stop the cramps at night; it's a pity you have had to stop taking calcium. Drinking more water (with nothing in it) might help, and certainly cutting out coffee will help. A patient I meet at my hospital also had cramps at night, and she put used wine bottle corks in a net bag and put them in the bottom of her bed - sounds strange, but she swears that the cramps went away. Whether it's the cork, or something in the wine remnants.... Joint and Muscle pain - I started drinking more water (with nothing in it), and that, with occasional mild pain killers (Ibuprophen - don't know what the US equivalent is), and whilst the pain didn't go away, it did ease it. There is a theory that these aches and pains are caused by changes in the bone marrow brought about by the drug - I guess that they are something we have to live with. Hair loss - my hair has got finer and is thinning out quite rapidly; there is no history of hair loss in my family, so I conclude that it is the drugs. I have had several courses of chemotherapy where I lost all my hair, so that may not have helped. Oedema - I used to get swollen ankles and periorbital edema. Cool pads on the eyes and resting with my feet up helped. Insomnia - I too suffer with that and I feel tired all day - short naps help, but not easy if you are at work!
Eventually Glivec stopped working for me and I'm now on BMS (Bristol Myers Squibb) (Disatabib), and no longer suffer with the stomach problems, which I found the most awkward. I have kept on with the calcium tablets, but I still get the joint and muscle aches and pains, and the mild oedema around the eyes, although this goes away quite quickly. I still don't sleep well, and I need to rest during the day. It is not your fault that you have this awful condition, and I know that all of us with Leukaemia sometimes we all feel that we are a burden, but as far as I'm concerned, if those you come into contact with can't live with you and your problem then they aren't worth knowing. Your family and co-workers will have to adapt to the way you have to adapt to your situation, and your health and well being must come first. It's no use you wearing yourself out to try and do what you used to be capable of, that only stores up future problems. And yes, you are getting older and that sure don't help, but life is an ever changing thing and we all have to go with the flow. I hope that some of my experiences may help you, and I wish you all the best for the future. Ian Portsmouth. Dx 1989 and still here!! --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
