xeloda and nerlynx

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emmabug76
emmabug76 Member Posts: 1

anyone tried this regime. im planning on starting these pills tomorrow. any tips and success stories out there

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  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited September 2021

    Emma,

    I only have experience with Nerlynx--took it for a year. There's a thread called Starting Nerlynx May, 2019 that I participated in and found very helpful to deal with the side effects of Nerlynx. Are they starting you on a lower dose of Nerlynx and titrating up to the higher dose, to help with the diarrhea?

  • BevJen
    BevJen Member Posts: 2,523
    edited September 2021

    Emma,

    I am on this combination. I am VERY sensitive to medication and medication changes. I started out on the xeloda first -- a low dose -- 1000 2x a day. Did not sit well with me. After about 3 days I was in the ER getting IV liquids and anti-emetics. Went off of it for about 5 days to let my stomach settle (I was very nauseous.) Then I restarted at 500 in AM and 500 in PM, 7 days on and 7 days off. This, from what I've gathered, is not a normal prescription.

    My doc also wanted me on neratinib because I have two ERRB2 mutations. So we started on 2 tabs, I think, and then moved to three. I haven't really moved to 4 -- I tried the other day and then the next day I had diarrhea. For me with the two pills, it was more like very soft stool, with the exception of one day when I had four diarrhea movements. The next day, all was fine. But I've stuck with 3 tabs since then.

    I only started on this combo in late June, so I haven't been on it very long. I've had two labs done -- my bloods are becoming more stable, and my TMs are looking better. I have a scan on Oct. 7th.

    Have had some fatigue, so be prepared for that. For me, in addition to the described D, the biggest thing has been the eating issues -- no appetite, no desire for anything, etc. So be prepared for that.

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