Stage 4 long term NED with hormonal therapy only

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42young
42young Member Posts: 162
edited February 2019 in Stage IV/Metastatic Breast Cancer ONLY

I just wonder there are how many stage 4 long term NED sisters who are only on hormonal therary, no chemo or target therapies ( Ibrance, verzenio, kisqali...) ???


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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited February 2019

    there is a couple of folks out there.

    @partyoffive is only on tamoxifen for the past 5 years. (Not sure how to connect her to this post).

    I often wonder the same thing. Do I need to be on ALL these medicines?? Can I do fine on just one???

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  • Goodie16
    Goodie16 Member Posts: 446
    edited February 2019

    I will be 5 years from original diagnosis in April and just had my 4 years since mets diagnosis anniversary last week. I was on tamoxifen only initially but struggled with the side effects. My MO suggested Lupron injections to shut down my ovaries and let me switch to an AI. Eventually had to have my ovaries out (and a complete hyster because of other issues) in summer 2016. I've been Arimidex only since then and have remained NED in the brain and body.

    Last year when Ibrance was getting a lot of TV time, I asked my MO about adding it to my regiment. He responded that it was best "to keep tools in the toolbox until we need them." He went on to explain that if/when I have a progression on Arimidex, he will switch me to another hormonal and add Ibrance (or another targeted therapy) at that time.

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  • Janice54
    Janice54 Member Posts: 83
    edited February 2019

    I was dx in 2006 with mets to my bones. I was on tamoxifen for eight years. No surgery, chemo or rads. I was NED for those eight years. Then a spot popped up on my liver. Went on femera, a year later we added Ibrance. I was back to NED. I have been blessed with no side effects. Four and a half years on that.

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  • Partyoffive
    Partyoffive Member Posts: 188
    edited February 2019

    hi

    I saw your post and wanted to comment-I will be 6 years in May I have Ben on tamoxifen and xgeva only since diagnosis.

    I had a pet scan in Jan and nothing is lighting up at the moment I’ve had long term stability prior to NEAD in Jan. Full disclosure I did participate in an immunotherapy vaccine trial at Hopkins about 5 years ago.

    Kristin

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