Hi, I have recently been diagnosed with CML and am taking Imatinib 400mg daiy since June 2017. Initially I had side effects which included nausea and diarrhoea sleeplessness and painful aching joints and limbs and cramps to my legs.. Now my symptoms are tiredness, nausea and swelling to my lower leg However my blood count now is normal which I am ecstatic about. What I would like to know has any other member of the forum had these symptoms. Thanks, vonnie.
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Hi Vonnie. Glad to hear your white cell count has come back to normal. On side effects, if you click on the Living heading above and then select side effects, you will see links to the information about side effects for the drugs. What you described is fairly common, and if you have lost the joint/muscle pain in 3 months you have done better than some people with that one . The other symptoms you describe are I'm afraid pretty common; they reduce to an estent over time but most of us live with some downsides - for me cramps, water retention (probably what's causing your swelling) and flatulence. On the nausea front, make sure you take the imatinib with or after a meal and with a large glass of water - when I don't do this I tend to feel nauseous.
The first six months of treatment for CML is usually quite challenging physically and mentally.Tiredness is normal as your body is adjusting to a new drug of molecular therapy /chemotherapy which is moderately toxic or quite toxic.;I suggest if possible to take some rest in the day if possible as this might alleviate the fatigue.
Odema or swelling in the leg is quite normal but suggest you hydrate well and do stretching ;you might try some massage or rub in some Deep Heat or similar.
Cramps are very normal but suggest hydrate well and stretch plus take some quinine/tonic water.
Toiletting- this is not a polite subject but you might not be the same again as far as this is concerned as you might have little notice of the need to go or it will be very sticky and messy.This is common with imatinib it seems.
Bone pain- one GP said to me imatinib is doing its job and clearing out the Ph+ cells in the bone marrow so expect some pain.Do not take ibuprofen as a painkiller as it affects the uptake of imatinib into the bloodstream.
Insomnia-is a recognised side effect but also when you cannot sleep one might speculate whether one will survive that long.This is all normal thinking for us as newly diagnosed CML patients
I wish you well