HER2 positive first in breast now in lungs.

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Bellaluna12
Bellaluna12 Member Posts: 2
edited September 2019 in Stage IV/Metastatic Breast Cancer ONLY

2017 diagnosed with HER2 positive. Went thru 2 chemo tmts. with terrible reaction & did not continue. Had surgery with radiation & on herceptin. December of 2018 showed in lungs. Had surgery on left lung to remove & biopsy. Was HER2 positive. 3 months of taxol (stopped taxol in April with no changes & since on herceptin & perjeta. Now scan shows 2 new spots (one on each lung along with the previous spots. Any words of wisdom? Or anyone going through a similar challenge.

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  • Anotherone
    Anotherone Member Posts: 633
    edited September 2019

    Have they tried doing more extended analysis of the biopsy specimen - there are many others receptors that can be over expressed and possibly targeted apart from her2+. My heart goes off to you for having to deal with it.

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  • LoriCA
    LoriCA Member Posts: 923
    edited September 2019

    Yep, have had multiple biopsies since my initial DX confirming that my cancer is still strongly HER2+ every time, but Herceptin does nothing to slow it down and every time I turn around it pops up someplace new. As soon as I finished up my initial round of chemo (I was Stage IV de novo) and tried staying on Herceptin and Perjeta for maintenance, my cancer started spreading again. Have been doing what I call "Herceptin plus" since then, Herceptin plus a chemo, Herceptin plus radiation, etc. Have consult tomorrow morning to decide what we're going to try next because I have substantial progression again. Kadcyla would ordinarily be next, but it's hard to be optimistic at this point since I was resistant to the last "herceptin plus chemo" that we tried. I guess we're just going to keep trying different chemos until we find one that works. I'm not sure it even makes sense to keep Herceptin in the mix at this point.

    I had genome sequencing done early 2019. Nothing was actionable besides the ERBB2 (HER2). Had a total of 11 VUS though.

    Wish I had some words of wisdom. It's very frustrating.

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  • xxyzed
    xxyzed Member Posts: 230
    edited September 2019

    Have you asked about neratinib? It is for her2 positive and has better results if also hormone positive. It is used for both early breast cancer and metastatic. It may be worth looking into if herceptin isn’t working. I can’t remember the technical details but I know it works differently to herceptin which may be more effective for your cancer type.
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  • Bellaluna12
    Bellaluna12 Member Posts: 2
    edited September 2019

    Yes, that may be the next treatment. Thanks for your input. Much appreciated

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  • tzoul
    tzoul Member Posts: 19
    edited September 2019

    I have similar story only that in my case taxol and herceptin - perjeta was effective (until my next scan of course). I think this combination was the key for my case. They also proposed to me to have the foundation one test but we had no tumor left to use. Maybe this will help you to get more information for your cancer. But do not forget that there are other treatments for you (the only positive thing in our her 2 case). Wish you the best. Keep fighting!

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