Nilotinib and Fatigue: What Users Say

• Dgr...
• Taken for 2 to 5 years
• November 14, 2018

Nilotinib for Chronic Myelogenous Leukemia "I take 2 (150 mg) in the morning and 2 at night 12 hours apart. So far, my side effects have been minimal. I feel bloated sometimes, but the fatigue seems to never go away. The hardest part of taking this medication is the timeframe with taking meds and eating. In the morning, it's not too bad, but in the afternoon, it's difficult because my kids and wife are all hungry, and I have to wait to eat for an hour after I take my meds. Most of the time, I just reheat and then eat earlier. The most important thing, though, is the medication is working, and my cancer is barely noticeable besides the side effects."

• Bob...
• Taken for 1 to 2 years
• November 9, 2019

Nilotinib for Chronic Myelogenous Leukemia "After a year on Sprycel, it wasn't working, so they switched me over to Tasigna. It brought my bcr/abl levels down more in 3 months than the whole year on the Sprycel. However, the 800 mg/day was too much for me, and I was neutropenic for several months and needed Neupogen injections, which was not fun. I've been able to tolerate the 600 mg dosage without any major issues beyond the standard fatigue and bone pain. Unfortunately, I've yet to reach a major molecular response, but hopefully that will happen in the next few months."

• yak...
• April 28, 2012

For Chronic Myelogenous Leukemia "Loss of hair. Restlessness, insomnia, chronic fatigue, diplopia, Bell's Palsy recurring, skin rashes and sores, depression, mood swings, vision blurred at times. The fatigue is the biggest problem right now. Had the summer from hell with diplopia and Bell's Palsy. The Bell's Palsy started on the left side, and when that calmed down, jumped over to the right. Months of pain, like someone drilling behind my ear and along the side of my face. My oncologist said it wasn't the nilotinib. I say it was a reaction between Purgodan and nilotinib, Purgodan being a pre-cleanser for colonoscopies. My blood work is fine, and my CML is under control. I did not tolerate Gleevec too well, so this was my next option."

• Jj ...
• February 12, 2017

Nilotinib for Chronic Myelogenous Leukemia "Took Tasigna 2 tabs in the morning and 2 tabs in the evening. She's having too many little poops, which made her sleepless. She feels bloated most of the time. She barely sleeps. Was diagnosed with CML last Jan 2017. Before that, it is important to recognize such symptoms. She is 68 years old, in good health, eating a healthy lifestyle, taking high blood pressure medicines since late her 40s. Does her annual check-up at age 55 up to present religiously. No history of family CML except for hepatitis B in her sister. She started having WBC high of Feb 2016 from normal 10,000, went to 35,000. Doctors thought it's just an infection, took 1-3 antibiotics in between, starting in August with onset fatigue, hard breathing, and hypoglycemia, which she never had sugar problems before."