Neratinib and Upset Stomach: What Users Say

• Nan...
• Taken for 1 to 6 months
• September 27, 2018

Neratinib for Breast Cancer, Adjuvant "Start in August 2018. At first, I didn't have diarrhea, but after 2 weeks, the diarrhea started 6 or 7 hours after a dose. My doctor prescribed loperamide and colestipol, but the diarrhea still continues, and my stomach aches, and I have no appetite. After 4 weeks, I saw my oncologist, took my blood work, and they called me the next day to stop treatment, my liver was inflamed. I was not dehydrated because I drink a lot of fluids. I lost 3 lbs. I don't sleep during the night from running to the bathroom all the time now. For some patients, it is good, but for me, it is not. I choose quality of life now. I had chemotherapy and radiation, and I know this therapy is for one year, but I don't want to damage my liver."

• col...
• Taken for less than 1 month
• January 21, 2020

Neratinib for Breast Cancer, Adjuvant "I took my first dose of Nerlynx today about 3 hours ago and am terrified as I read more and more about the horrors of this drug. My stomach is cramping, but no bathroom yet. My onc has me taking 2 loperamides at a time, three times per day. He is starting me off at 1, 40 mg tablet per day for the first week and is easing me into the full dose very slowly, so maybe I will be okay? What is the dosing everyone is taking, and are there any good stories out there from people able to complete the year protocol?"

• Sto...
• April 25, 2021

Neratinib for Breast Cancer, Adjuvant "I had stage 2 breast cancer, HER+, size 3 cm in late 2017. After 6 chemos - 4 strong drugs reduced to 1 cm, surgery, 6 weeks of radiation, I started Nerlynx. 6 pills a day for 12 months. It started out okay, little stomach ache, but by the 3rd week, I was in severe stomach pain, diarrhea daily. Imodium helped some, but after 2 months, it didn’t help. A stronger Imodium prescription ate up my stomach lining. I struggled through, determined not to go through cancer again. Five months through, I had to stop for 3 weeks before - 3 weeks after for open heart surgery at the young age of 65. Starting back on Nerlynx, I convinced the doctor to go from 6 to 5 pills a day. At the end of 11 months, I had it. It was impossible to eat anything without losing it. My stomach and bowels were raw. I only survived this long because I took a teaspoon of baking soda in a glass of water every day. I lost a lot of weight. My doctor told me I was the longest lasting patient to try Nerlynx. I hope it was worth it. Now 2021 and still cancer-free. Fingers crossed."

• Que...
• February 11, 2018

For Breast Cancer, Adjuvant "♡☆PART ONE☆♡ I started neratinib (Nerlynx) on 1/26/18 (Friday). -About 8 hours after taking my first dose of neratinib (six 40 mg tablets) with loperamide (two 2 mg capsules), I had a headache and stomach ache. -About 10 hours after my first dose, I made my first visit with my arch-nemesis (the toilet/commode/potty). -I continued as instructed to take two capsules of loperamide three times daily. -By the time I took my second dose (1/27/18 Saturday), I had become the vulnerable one to my arch-nemesis with at least 15 encounters. -Now the arch-nemesis and I are becoming friends as I am visiting 20-25 times a day with 7-8 timed visits. I had also vomited about 6 times as well (1/28/18 Sunday). -With no sleep, vomiting 5 times and over 25 mini vacations to the bathroom, my body couldn't take any more showdowns. I made an appointment with my oncologist for the next day (1/29/18 Monday) while still continuing to take the loperamide as directed."

• 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!"