Hello. I’ve recently been diagnosed with CML. Thank you to those who run and contribute to this website which has been a huge help. I’m shortly going to commence on Nilotinib. I realise the side effects will differ for everyone but are there any recommendations for dos / don’ts in the first few weeks to help?ll Thanks
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Starting nilotinib - advice please
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Hi, Sorry for your diagnosis. I recommend reading the information on this site because it’s very reassuring. We are lucky to have an illness that is very easily managed with a simple daily pill. That is the most important thing to realize. The results in the first month were astonishing — the drug makes the blood counts go back to normal so fast! I take imatinib so I don’t have any experience with Nilotinib. But get enough sleep, stay as active as you can, eat well, all the usual things for good health. The diagnosis is a bit of a shock, and it’s disappointing that we can’t be “cured,” but as chronic illness goes, this one is really not bad.
Take good care and be kind to yourself.
Justine
I was diagnosed in October and started Nilotinib in November. It was quite painful for a week as it killed the cells so quickly. I had horrible bone pain, particularly in my shins. Good news is my BCR ABL came down quickly. I started at 300mg 2X a day. It was too high of a dose for my body and 3 weeks in changed to 200mg 2X a day. At the 600 mg daily dose, I had pain in my liver. At 400mg daily the side effects I experience are: hair falling out, itchy skin with occasional rash and occasionally bone pain.
My side effects are minimal at this point compared to some on the site. I was able to be out in the sun without negative consequences, which surprised me. I have adjusted well to Nilotinib and live a normal life. I am able to exercise as much as before I was diagnosed and my energy level is good. I do take supplements several people on this site recommend, especially vitamin D. In short, it was uncomfortable and scary at the beginning but over time my side effects lessened, although I did not improve as quickly as my doctor said I would. It took me 3 months to start feeling better.
Best of luck to you. Although I have not been on Nilotinib very long, I am happy to answer any question you might have.
Becca
Hi,
Just wanted to add that your blood panel might be out of whack at the beginning but should get back to normal levels over time. My wife had elevated liver enzymes (ALT and AST) and bilirubin as well as low platelets over the first year or more, but all of these are now in the normal ranges. She is still taking tasigna and responding well. May take your body some time to get used to it too.
Best of luck,
Chris