Hello everyone. I'm 65 and was diagnosed with C.M.L. the end of October 2012. What a shock that was, up until then I thought I was a pretty fit fella for my age. Had been to my local doctors as I hadn't felt myself so to speak for a few months and had a bit of stomach pain, not bad. Anyhow I saw the practice nurse, after having a look at me she arranged for me to have blood test a couple of days later. Had the blood test (first one I had ever had) later on that day I had a call telling me to go to Colchester Haematology unit and that I would have to stay in hospital for 3 days. Even on the way to hospital I was convinced my bloods had been mixed up with someone else, but that wasn't the case. After a lot of tests was diagnosed with C.M.L. I have been on Nilotinib 2X300 a day for just over two weeks, have now got a rash (like goose bumps) over chest and back, not on my face as yet, allthough my head itch the rest don't. I must just say that the team at Colchester are great, they make you feel as if I'm the only one they are treating, when I can see how busy they are. I have come to terms with things now and what a great site this is, feel posotive.
Happy Christmas & New Year to everyone.
Joe.
You are here
Hi, Joe from Harwich.
Hi Joe and welcome. Glad you have found us so quickly. There are lots of people from many countries on here, so you are in good company. Many are being treated with imatinib but a lot with nilotinib, as well as dasatinib.
I am sure that others will be able to advise you about nilotinib side effects better than I can- but I think the side effects do lessen as your body gets used to the therapy. I do hope the itchy rash clears soon- any kind of rash can be very uncomfortable.
I do hope others will take the time to advise you. Meanwhile, take things easy and slowly- the shock of diagnosis is something we have all experienced- but we are in exciting times regarding how CML is treated.
Best wishes
Sandy
Welcome to the site . I am treated at Colchester under Dr Campbell - they are a great team. I was diagnosed in 2009 when i was 43 years old after routine blood tests. I have just changed to Nilotinib and so far I have been fine apart from just niggly things. I do think Sandy is right, give it a bit of time and the side effects should ease. I may bump into you at some stage at appointments on Tuesdays clinic
Jacqui