Triple Negative Stage IV

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  • Anonymous
    Anonymous
    edited July 2022

    Hello everyone. I'm posting this on moth's recent forums.

    Moth announced on Twitter that she posted a detailed update on her Tumblr blog (in her signature). Unlike IG, you don't need an account to read it. Essentially, she's still hoping the treatment will work, but her liver is a big problem.

    https://www.tumblr.com/blog/view/nevertellmetheodds2017/690346753584676864?source=share


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  • NicoleRod
    NicoleRod
    edited August 2022

    I am sorry to let you all know that Moth (Margret) passed away on Friday Aug 12th.

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  • KarPC
    KarPC
    edited August 2022

    I am so heartbroken to hear about Moth.

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  • mkscully
    mkscully
    edited September 2022

    Hello: I am new to the site. I was diagnosed with MTNBC in December 2021. I've been doing a clinical trial of chemo (gemcitabine and carboplatin) along with immunotherapy (pembrolizumab). My neutrophils didn't recover a couple of cycles ago, so they had to stop the chemo and I'm just doing the pembro alone. I have a CT scan on 10/11; my doctor is fairly certain we'll see progression—I have mets on my lungs.

    Her recommendation is the new HER-2 low drug that's just out, Enhertu. Anyone out there on this who can tell me how it is? Lose your hair? Crash on day 3?

    Anything you can share is welcome.

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  • NicoleRod
    NicoleRod
    edited September 2022

    Mk...sorry that you might have progression I am confused...Enhertu is for Low HER2 you are triple neg...did you have a FSH test showing you are low her2? If so what was the %???

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  • mkscully
    mkscully
    edited September 2022

    My initial tumor was negative for HER2, but they tested a sample that they took in June and it was +1 for HER2. So yeah! I can get it.

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  • NicoleRod
    NicoleRod
    edited September 2022

    MK...so when you got diagnosed stage 4 were you Triple Neg? Or were you ER+ HER2- then flipped to Tripl Neg and now had 1+ HER2 ??


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