Nerlynx - having a tough time

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kaufmanscsi
kaufmanscsi Member Posts: 31
edited November 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hello. I am a stage 4 survivor and was recently prescribed Nerlynx to go along with Herceptin for a new abdominal lymph node met. I am really struggling on it and was wondering if anyone is taking it and how they are doing?

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  • hapa
    hapa Member Posts: 920
    edited November 2019

    Hi,

    I'm not stage IV, but there's a small group of early stagers who are on Nerlynx and we have been posting in this thread:

    https://community.breastcancer.org/forum/80/topics/870980?page=1

    You are absolutely welcome to join us. The general consensus is that it can be rough starting out, avoid cherries, and Miralax is strangely helpful with the big D even though its a laxative. Are you starting with a low dose and increasing your dosage? That is a common strategy as well. I started on four pills/day and increased to five after 2 weeks, then six after 2 more. It worked well for me.

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  • kaufmanscsi
    kaufmanscsi Member Posts: 31
    edited November 2019

    Thank you so much! I plan to join in! I started at max dose an after a hellacious week, my onco decreased by one pill. It seems somewhat more manageable, but it's so interesting...I was on lapatinib and other drugs that were supposed to have intense GI side-effects and I never really had a problem. Until now! Nerlynx sucks. But maybe it's working - so I will give it a chance!

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