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Nerlynx/neratinib

bakerb
bakerb Member Posts: 7

Has anyone been prescribed Nerlynx following full year of adjuvant Herceptin and perjeta

Comments

  • caiti2067
    caiti2067 Member Posts: 10
    edited August 2022

    Hi - There is a thread about that here https://community.breastcancer.org/forum/80/topics...

    A lot of people have used it, including me. I didn't find it too bad, much easier than chemo. Some fatigue and a few nosebleeds were my main side effects. (Note, I didn't get Perjeta just Herception in case that makes a difference)

  • redkitty815
    redkitty815 Member Posts: 18
    edited August 2022

    i am 3/4 of the way through my year now. The diarrhea is a real thing. For me, it’s been a bit of a pendulum and I have to manage the loperamide (immodium) to best respond…there are dosage instructions for your first few weeks, then you listen to your body. I did months at 1 loperamide (1/2 dose) per day, but my Dr told me to take a break during vacation and when I came back on after 2 weeks, the diarrhea was out of control for months. It’s finally calming down and I am trying to balance my loperamide dose again. Dairy seems to be a trigger so I try to limit that.

    Otherwise, my main side effect is fatigue-definitely not as bad as chemo, but it is real.

    I choose to stay on it because there were promising results in their studies for a subset of the trial population with the same characteristics as me. I don’t want to feel like I didn’t do everything I could. My dr said it was worth trying, but low bar to stop it and would support any choice I made because the data was promising, but still very limited.