Neratinib and Fatigue: What Users Say

• Ano...
• Taken for 6 months to 1 year
• October 19, 2021

Neratinib for Breast Cancer, Adjuvant "Just completed my year with no dose reduction needed. Yes, I had some episodes of soiling myself, yes, the fatigue wasn't the best. I also had bladder pain that needed morphine and a clot in my inferior vena cava, which was yellow card reported (UK). However, I would do my year again in a heartbeat. I have arthralgia from letrozole and have another 8 years on it. Again, I'll just keep doing what I can. The feeling of knowing I'm giving myself even a tiny bit of risk reduction gives me the determination to pick myself up and keep going. Six feet above is better than six feet under!"

• 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."

• Anonymous
• September 3, 2019

Neratinib for Breast Cancer, Adjuvant "My oncologist put me on Nerlynx. I was diagnosed with stage 4 breast cancer in 2017. I had a recurrence in July 2018 when I found a huge lump on my neck. I started IV infusions with Kadcyla every 3 weeks. The cancer went to my brain. I was disappointed to find out after the fact that Kadcyla does not permeate to the brain! My oncologist was adamant that I start Nerlynx. He started me on 3 daily. I took it for one day.... severe diarrhea, stomach pain, dizzy, fatigue, crying, angry.... I will never take this drug again! Let alone it causes severe liver damage and heart damage! I will continue CyberKnife radiation."

• 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!"

• Ano...
• Taken for 6 months to 1 year
• September 6, 2025

For Breast Cancer, Adjuvant "I have been taking this medication for 12 months, just had my last tablets. I was really worried before starting this treatment after reading reviews, but for me it wasn’t too bad. I had diarrhea a lot, but it was manageable, I had extreme fatigue at times, it would hit me around tea time and I would need to go to bed. Apart from that, I have been okay, I am hoping the effects of it will go now quite quickly."