Net lynx/Neratinib

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leftfootforward
leftfootforward Member Posts: 1,726
edited November 2019 in Stage IV/Metastatic Breast Cancer ONLY

Is there s thread for this drug somewhere? I will be going on it and am looking for people with experience with this drug.


Thank

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  • Kkrenz
    Kkrenz Member Posts: 100
    edited September 2019

    I would like that as well....I just started it a few days ago and need some advice.

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  • carmstr835
    carmstr835 Member Posts: 388
    edited September 2019

    We have a facebook page.

    Nerlynx (Neratinib) Support Group it is closed, but apply we have quite a few people that share their experiences with this drug, and lots of help!

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  • kaufmanscsi
    kaufmanscsi Member Posts: 31
    edited November 2019

    Hello there. I would like to join the Neratinib FB page if that is OK. I have been living with stage 4 for about 10 years but recently started it about 3 weeks ago and have been struggling with a variety of symptoms. Would like to talk to others. Thank you!

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  • Homemadesalsa
    Homemadesalsa Member Posts: 153
    edited November 2019

    Here's the address for the FB group: https://www.facebook.com/groups/1398239886926911/

    And we have a page here on BCO that you are welcome to join as well, even if you didn't start in May. There's a lot of good advice on it, and some pretty funny bits too: https://community.breastcancer.org/forum/80/topics...

    The first 2 months took some figuring out with imodium and colestipol, but now I can eat pretty much anything I want. I started with 2 a day for a week, went to 3, and am now at 4, which is where my MO wants to keep me. SEs not bad at all.

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  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited November 2019

    kaufmanscsi, pardon my intrusion into Stage IV territory but there isn't much on the forum on Nerlynx. I'm only eight weeks ahead of you.

    Did you start with a lower dose and increase your dose gradually or start with all six pills? I titrated up fairly slowly, got to five pills for a week and I either had to go back or stop entirely (the D was epic), so I'm at four for the time being. I would describe it as not optimal, but tolerable, in that the D is somewhat predictable and never something that has become a public embarrassment. This past week, the RN who calls me from the specialty pharmacy made me talk to the pharmacist because of what I described to her (after she fussed at me for not taking six--and I restrained myself from telling her she could take six if she wanted to!). She told me to increase my dosage of Imodium to eight a day. It has helped some. I work from home, don't "feel" bad most of the time, but I live with a LOT of D, or at best, looseness. Early on, I swung on the trapeze of Diarrhea-Constipation-Diarrhea-Constipation (that was the WORST) and a friend with IBS suggested Miralax (of all things), and you can only imagine my response! But Miralax is an osmotic laxative, absorbing water in the colon and acting like a bulking agent. Believe it or not, I think I would have have to quit weeks ago were it not for Miralax. Nothing about my bowels is normal right now, but I can live with this situation.

    I see my MO on 11/19 for the first time since starting Nerlynx and I will ask about prescription options (Homemade is on Colestipol, as she mentions above--and unlike Homemade, I'm not eating "whatever I want"). For now, I am planning to try again to increase my dose early in December. Our second daughter gets married in three weeks and I can live with this situation as it is but no more.


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