Is NED still possible?

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Anonymous
Anonymous Member Posts: 1,376
edited April 2022 in Stage IV/Metastatic Breast Cancer, Open to All To Contribute
Is NED still possible?
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  • aymelle
    aymelle Member Posts: 3
    edited April 2022

    Hi everyone,

    My sister (47 y.o.) was diagnosed stage IV in 2016 following a few years of remission from an earlier stage BC. She has mets to bone and liver, I believe ER+ HER2-. She has never achieved NED status and I'm wondering if this is still possible or if I'm holding on to false hope.

    She did well on Ibrance for about 4 years, followed by 2 years of Verzenio. There has been some progression according to her latest scan and her doctor is now considering Piqray.

    She also experiences pretty severe nerve pain and basically at the moment is on a high dose of pain pills which leaves her fatigued.

    I guess I'm just wondering if things inevitably get worse from here - she seems to have done the best on her first medication so far and we know Piqray has some scary side effects. She doesn't seem hopeful that it will be very effective because apparently each subsequent treatment is less effective?

    I know nobody can predict the future but does anyone ever get stability or NED status following a few less successful treatments?

    Also - how many lines of treatment are there? I am sure it depends on type etc - I see the names of so many medications and wonder if she still has all these options. This will be her third “line” of treatment I guess?

    Thank you X

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  • kksmom3
    kksmom3 Member Posts: 183
    edited April 2022

    My SIL has for 24 years now!

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  • aymelle
    aymelle Member Posts: 3
    edited April 2022

    she’s been NED 24 years?? Holy cow

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  • kksmom3
    kksmom3 Member Posts: 183
    edited April 2022

    My SIL has for 24 years now! She's not NED, but her cancer has not wildly progressed, and what has seems to be diminishing.

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  • aymelle
    aymelle Member Posts: 3
    edited April 2022

    That’s amazing! Long may it continue

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2022

    You are correct; nobody can predict the future. It’s also important to remember that bc is a very individual disease. Sometimes a treatment works well for some and not others. That makes it difficult to say how many lines of treatment there are for a given individual. I’m sorry that I can’t give you a more definitive answer. Could your sister achieve NED? One never knows. I’m sorry if that sounds like a non-answer but that’s the current state of things.

    I have been NEAD (the evidence of an inactive bone met exists) and have never even had chemo. I have only been on AI’s since my initial dx and tx (rads to bone met). Ibrance had not yet been approved at the time of my dx. It’s been 10 1/2 years but this goes to show you how individual and unpredictable bc can be. There is no cure for stage IV and some of us respond well to treatments but far too many don’t. We just keep throwing various treatments at it and hope something works or new treatments are approved. I am sorry that your sister is going through this and I wish her all the best.

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  • moth
    moth Member Posts: 4,800
    edited April 2022

    I know someone with mTNBC who has got to NED after several lines on which she progressed, so yes, it is possible. But it isn't statistically likely from what I see in the literature. I've heard one of the reasons that later therapies are more likely to fail is that not only does the cancer burden get bigger over time, it also is often becoming more genetically diverse. So even if a treatment is effective against some of it, other parts will not respond to treatment & continue to grow.

    The pain is an important issue to address. Can the nerve pain be tackled in other ways? Nerve blocks? Other medications that do not cause sedation or fatigue? Perhaps a palliative pain specialist consult would help?

    From what you've written she has many more lines of treatment available which could buy a significant amount of time if her cancer responds. I hope she can feel physically well enough & optimistic enough to go ahead & try.

    best wishes

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited April 2022

    I'm on Piqray and it's been easy. I wouldn't mind staying on it forever. There's no need to fear it. Yes, some people have bad side effects but that's true of every drug. And even if you experience them, they are usually manageable.
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  • Partyoffive
    Partyoffive Member Posts: 188
    edited April 2022

    hi

    I’m also on Piqray it’s been about two months and I’ve had an uptick in my glucose but metformin is controlling it and a rash that lasted about a week. Besides those row things I have felt great and would have no problem continuing on it if my scans are stable in May. Now Ibrance I could not tolerate at all-it’s funny how we all react differently to different meds. Best of luck to you and your sister.

    Kristi

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