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Starting Neratinib (Nerlynx)

1982m Member Posts: 224

I was dx early stage, node negative, triple positive in the summer of 2021. I did 12 weeks of taxol and a year of Herceptin. I had a lumpectomy, re-excision and three weeks of radiation.

I’m starting neratinib early March and wonder how others have experienced the first few months on it, especially with the slow increase in doses and preventative anti diarrhea medications? Did you end up taking time off work those first few weeks? Did you lose weight or gain it?

Any experiences welcomed! Thank you ahead of time!


  • debgrace
    debgrace Member Posts: 1
    • The diarrhea didn't start until I was up to the full dose. And I chose not to take Immodium until that point. I only take Immodium as needed now. I get diarrhea now only once in a while ( maybe every 2-3weeks). It will really drain you when it hits. Avoid stress, emotional situations. Thats what triggers mine. Immodium definitely works! But ( I'm a nurse) Immodium will constipate you if take too much. So just take 1 if that doesnt work take another. For me, that would be enough. And I am fine for a few weeks. I have 3 more months to go. The first few weeks I had noticeable energy lows ( weakness) but not that I needed to sleep. Work may be ok, especially if you work from home. I was really apprehensive about starting the med but you will get in tune with your body and realize what foods help/ make it worse. Its nothing like chemo. Hope this helps!! 🙏 you got this! Rest when you need to. If you can, take work off the first 2-3 weeks until you know how you'll react. No weight gain for me. I do get muscle spasms that are wierd but not unbearable. ( legs, arms).
  • 1982m
    1982m Member Posts: 224

    Thank you so much for the info! Incredibly helpful :)