i am new to the forum. I have been diagnosed with cml in June last year. Initially I started with Imatinib but switched to Nilotinib in last October. At the beginning, it wasn’t easy due the fact it has to be taken absolutely at specific times, with 12 hours gap between morning and evening doses. To make sure I don’t forget, I set the alarm on my mobile phone, at 6 am (take tablets morning), breakfast around 7, stop eating at 4 pm and 6 pm take tablets 2nd dose, dinner anytime after 7. Setting the alarms really help me, otherwise it will be quite impossible for me to remember with busy life work and kids. When choosing time, I have decided the times depending on what suit best with my daily routines. For example, I decided to take morning tablets at 6, breakfast at 7, as I have to be at work at 9. I follow the same pattern everyday.
In terms of side effects, low blood counts but better now, joints and muscle pains but again improving. I have some spots on my skull, like pimples and get tired easily but overall manageable.
I saw the consultant two weeks ago, we are hoping to reduce the dose to one dose, after several months, depending on PCR test results.
Hope this will help! I wish you good luck!!! Take care.