Neratinib and Tiredness: What Users Say

• que...
• February 2, 2018

Neratinib for Breast Cancer, Adjuvant "I have taken Nerlynx (Neratinib) for 1 week. Today, the 7th day, I'm going back to the Imodium every 6 hrs. Within the first 8 hours, my stomach was cramping, diarrhea, and nauseous. After the 3rd day of diarrhea more than 15 times a day, my oncologist increased the Imodium to every 2 hours. I'm still tired but have high hopes in continuing for the full 12 months."

• Pos...
• Taken for 1 to 6 months
• September 25, 2024

Neratinib for Breast Cancer, Adjuvant "I have now been on Nerlynx for nearly 2 months. I started with 3 tablets a day, increasing to 4, and then 5. I am now on the second day of the full dose of 6 tablets. I have suffered with diarrhea for the past year, since my first cycle of chemotherapy, which I had to stop due to chemo toxicity. I was absolutely terrified about having even more diarrhea on this medication. In fact, my existing diarrhea is a little worse, but nowhere near as bad as I had feared. At its worst, I have had 7 episodes in one day, but on other days only 1 or 2. Loperamide gives me diarrhea, so I am on 15 mg codeine up to 4 times a day. I have had a couple of nosebleeds, I have a dry mouth, and my nails are a bit flaky. I have also had a couple of headaches since going up to full dose, and I am very tired all the time. However, it is not as bad as I had feared."

• Tou...
• Taken for 6 months to 1 year
• November 6, 2021

For Breast Cancer, Adjuvant "I finished my year of taking this drug yesterday! Things I learned through keeping a food diary for a year: beef will trigger crampy diarrhea, as will too much fat, dairy, and fiber. (But ice cream is possible!) Do not eat fast food unless a small salad or light wrap is available. Small meals help. Soup and crackers. My appetite was reduced because of a low-key stomachache, which sometimes ramped up into major cramping. Plan to be near a restroom until you learn your triggers. Bad days meant I overate and had 6X diarrhea and gut pain. Good days meant I had 1X diarrhea, usually on a schedule. I took one Imodium with Nerlynx every day and added up to eight total in one day as needed. It worked better for me to control what I ate. To me, chemo was much worse than this, but I did have tiredness, slight muscle cramping, skin fissures on fingertips sometimes, mouth a little dry/sore, and my fingertips are wrinkly like after a bath. My nails are cracked, but that started with chemo. Time to travel again with less planning!"