Neratinib and Constipation: What Users Say

• Mon...
• March 13, 2021

Neratinib for Breast Cancer, Adjuvant "I have been on it for 10 days. I felt nothing for the first 3 days and got so constipated from the Imodium that was prescribed that I had to go on laxatives. I thought perhaps taking it with my morning smoothie (fortified with calcium) was interfering with it, the pharmacist agreed, and it was! As soon as I switched to taking it with lunch, the diarrhea started that night. The next day it stopped, so I stopped the Imodium and was fine for three days. Then I had duck for dinner, and I was so sick with diarrhea that night! For the past three days, I have had no meat and no grease and have had no diarrhea. I am starting to believe it is influenced by what you eat. My fingers are crossed! Anyone else agree? Other than that, I am fatigued, and this depresses me."

• AFH...
• Taken for 1 to 6 months
• April 11, 2020

For Breast Cancer, Adjuvant "Started Neratinib in November 2019, 11 months after finishing Herceptin (just made it into the criteria for Neratinib when approved by NICE in the UK). Started on 3 x day loperamide, but after the first week, very constipated, so stopped loperamide, resulting in severe diarrhea. Took about 10 days to establish correct levels of loperamide for me. Just completed month 5 of Neratinib and now take just 2 loperamide in the morning and have very infrequent diarrhea. Have tried to stop the loperamide completely, but it’s not been successful! For me, Neratinib has been okay, and diarrhea not a problem. Guess I’m one of the lucky ones. Really hoping to get to the 12-month mark."

• Gem...
• Taken for less than 1 month
• September 29, 2019

For Breast Cancer, Adjuvant "I've been on Nerlynx for 10 days, started by taking it alongside the recommended budesonide and loperamide, but got constipated, burning, bloated stomach, shortness of breath, fatigue, and insomnia, and severe vomiting. Stopped taking the support tablets 3 days ago, minor improvements, no longer vomiting, but still have not had bowel movements! I may need help for constipation while on Nerlynx!"