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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
I have been diagnosed 10 weeks on Imatinib for 8, but side effects been very trying, pain in arms now legs really bad for days then not so much.Tiredness and obvious shock and anxiety at diagnosis is quite bad even though im trying to be positive.
Consultant looks confused at my severe pain, it makes me worry , then nurses say oh yeah its common!! TKIs are im told wonderdrug, and im grateful but are the side effects long term? I have been given pain relief off nurses though
Hi their when I was first diagnosed I had similar problems some of it might be the process you have been through to level you out a bit in hospital can make you really tired. But some of the drugs took me a few months to settle the best as possible the tiredness for me more or less went away but I was on cetrezine to manage itchiness and was left with dry skin which I had creams for these side effects lasted on a different pill for the hole time but where managed to have a pretty good quality of life. If it really doesn't stop you might be able to try another pill.
Hi sorry to hear things, out of interest there is a support group on Facebook [edited by admin]
Well worth joining as there are hundreds of other cml patients, and a great community. it is a closed group, so people outside of it will not see any posts, or know you are a member Nigel
I was diagnosed 10 years ago, and after some chemo I have been on Imatanib ever since. I don't get any side effects now just weariness, but that may be an age thing. Taking the medication becomes away of life. My initial BCR/ABL test was 84.34% now 10 years later it is 0.004% and very stable. So what was a killer years ago the advances in science have made it possible to have a normal life and CML.
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