BONE MET's --Anyone now NED?

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sas-schatzi
sas-schatzi Member Posts: 19,603
edited April 2018 in Stage IV/Metastatic Breast Cancer ONLY

Dropping this topic in here and then flying away as I'm not S-IV

Twice this week, two sisters here with bone met's, each stated they are now NED for two years. If there are two, then there may be more. Discussion the specific course of events, I think is important.

Thanks folks for posting. My hope in doing this thread Is that each put the drugs that have been used and being continued. So, other folks can SEE if there is trends that keep the beast at bay.


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  • chrissyb
    chrissyb Member Posts: 16,818
    edited August 2016

    Hi Sas, yes I have bone mets and gave been NED for five years now. Still living a near normal life and recently opened my own Antique business.

    I love photography and you will often find me wandering around with camera in hand. Other than my regular check ups, annual scans and the hand full of pills I take every day my life follows all the normal patterns.

    Yes it is possible.

    Love n hugs. Chrissy

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  • fredntan
    fredntan Member Posts: 1,821
    edited August 2016

    My last weeks scans CT of abdomin and bone scan where both negative. I'm over 2 years NED. putting life back together. energy is still low-like when normal people feel tired. painting class starts tomorrow, but missing first day for mri neck. it has issues. dealig with some pain. and I was talking to my old friend Sas up there. so please excuse her for posting here

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2016

    Raising my hand! Have been NED for 8 and a half years with initial diagnosis of bone mets only. I had a lot of back pain before diagnosis and during part of my treatment (chemo, surgery, radiation). I had also lost more than 10 percent of my weight. The pain eventually went away and hasn't come back. It was replaced by pain in the knee and other joints and muscles but not complaining because these come and go, usually with the help of exercise or an anti-inflammatory. I gained weight during chemo but have lost most of it since. My hot flashes have subsided significantly but still happen many times a day even after 9 years. I've had eye issues (vitreal detachment in both eyes), which reminds me I should go to the doctor to have them checked. My checkups are now every 6 months and my scans will probably be a biennial affair.

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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited August 2016

    I've been NEAD for three months. Dx'd with multiple (C6, T10-12, L1-6, right 8th rib, right ileum and femur) bone mets in October of 2015. Did both Taxotere and then Taxol because Taxotere became too difficult. I have scans again today. Praying to remain NEAD.

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited August 2016

    My doctor is a stickler for semantics. He won't say "NED" because he says my bones will always show "evidence" of disease, but he will say "stable". I like to think of "stable" as the same as "NEAD" (No Evidence of Active Disease), which I have enjoyed for nearly 2 years. I too have a relatively "normal" life, although being on Herceptin/Perjeta means infusions every 3 weeks. I still work full time, exercise, and enjoy my hobbies (hiking, photography, gardening, scrapbooking...) and traveling with my DH.

    I like to to think long-term NEAD is possible and maybe even becoming more common.

    PS - Crissy - congrats on the antique business! I love to hear of fellow Metsters starting new ventures. :)

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2016

    NED for 5 years and still on anti-hormonals.No chemo but did have rads to bone met

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited August 2016

    Thanks Shutterbug! It's a slow beginning but it should pick up as Spring really gets going. ......still a little cold at the moment but I have made some sales.

    I'm on my second AI, I had rads to mets and some progression on the first AI (Arimadex ) so I was started on Femara and that's what I still take.

    I hope this thread gives newbies some hope.

    Love n hugs all. Chrissy

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited August 2016

    So great to hear from all of you ladies who have achieved NED on hormonals. I started on Femera last week, I have extensive bone mets. Am having some significant pain in one rib and hoping it lessens as I go on, as I don't think I can have radiation due to Lupus. You all make me hope for years on Femera. I also need to get on Xgeva, but I have so much dental work that I have been putting off for years because I just can't afford it, so I have no idea what I'm going to do. Thanks for posting your stories and I hope and pray I can join you being NED :)

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2016

    Thanks folks for posting. My hope in doing this thread Is that each put the drugs that have been used and being continued. So, other folks can SEE if there is trends that keep the beast at bay. I'll put this in the topic box.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited April 2018

    bump

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