Neratinib and Headaches: What Users Say

• Lin...
• Taken for 1 to 6 months
• November 1, 2021

Neratinib for Breast Cancer, Adjuvant "For the first 3 months, it was brutal, now, not so bad. I do have major muscle cramping all over. Sometimes it wakes me up at night. The diarrhea stops around 3 months, but it’s to get there. I also get a lot of headaches. If it can cut my recurrence by half! I am still in… 9 months to go!!!"

• 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."

• 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."