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Any stage IV surviving 5+ years ?

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dorimak
dorimak Member Posts: 89

When you look up stats for stage IV they’re dismal, yet I continue to see lots of longer term survivors on this site. Some were given a year or two. Would love to hear how many are there and how life’s is for you. I’m coming up on three years and just failed with letrozole. MO says plenty options sti

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  • bailey5
    bailey5 Member Posts: 27
    edited December 2018
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    hi Dorimak:

    I’m stage 4 Mets to lymph/lungs x13 mos on ibrance/Femara. Love your question; hope you get lots of replies!

    Sorry ur Femara is failing; how do you know and what are your next steps—this is probably a common fear to those on ibrance; but I’ve heard of those who stay on ibrance almost 4 years and running. It seems to me & I could be mistaken that bone Mets have better prognosis? Hope your feeling well.

    Happy holidays to all.


  • heidihill
    heidihill Member Posts: 1,856
    edited December 2018
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    11+ years with bone mets at initial diagnosis.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,748
    edited December 2018
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    7+ years, single bone me

  • SchnauzerMom
    SchnauzerMom Member Posts: 75
    edited December 2018
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    6 years and 5 months with liver and bone mets. Several treatments have failed, but at least three have been very effective for me. Good quality of life (but quick access to bathroom is necessary). Hang in there!!

  • HLB
    HLB Member Posts: 740
    edited December 2018
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    6 years 8 months. Took letrozole alone for 2 years. You are doing great and will continue! Stats are old and not very accurate. Stick with this site. I am stillbone Mets only but might have recently got liver Mets. It's not showing on scans yet but somethings up with the liver which seems to be getting resolve with current treatment. 

    Theres was post like this on fb by Kelli Davis and it was unbelievable how many long term survivors who were "given" a very short time by oncs. They really shouldn't do that. 

  • tina2
    tina2 Member Posts: 757
    edited December 2018
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    It's been seven years since I was diagnosed with lung mets, which were quickly tamped down by Faslodex. Here I am, getting older and creakier, but living life. There are many of us, thanks to new treatments!

    Tina

  • brooke17927
    brooke17927 Member Posts: 15
    edited December 2018
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    prayers and positive vibes for all of you, I'm new here, have a biopsy next week, I just wanted to post.

  • Stllivin
    Stllivin Member Posts: 79
    edited December 2018
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    I’ll be starting 6 years in 2019. Bone and lung mets.

    Suzy aka stllivin

  • blainejennifer
    blainejennifer Member Posts: 441
    edited December 2018
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    6.5 years. Never more than 13 months on any given treatment. Bone for the first 4 years, then bone and liver.

    Having a mets blip now, but am sure I'll get back to a good point.

  • GG27
    GG27 Member Posts: 1,308
    edited December 2018
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    4 1/2 years, but had bone mets undiagnosed for at least a year prior. On my second line of treatment for mets, letrozole & Ibrance failed after 30 cycles, now on fulvestrant. Feel great.

  • sherry35
    sherry35 Member Posts: 155
    edited December 2018
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    Thank you all for posting! I really needed to read this today. I was almost 12 years out from initial Dx and diagnosed with lymph node/bone mets in late October.

    Cheers,

    Sherr

  • sandilee
    sandilee Member Posts: 436
    edited December 2018
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    My mets were found in 2011, so 8 years knowing I have mets. My onc says that I probably had cancer in my blood from the beginning (2007) because when they found my mets they were throughout my skeleton. So if you consider that, it has been 11 years. Bone only until 2015, when they found liver mets which are stable at the moment, with Verzenio.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited December 2018
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    7.5 years. Bone only for first 4.5. Then a liver blip, quickly remedied, now at 7.5 years another liver blip. Keep in' on top. you've got lots of options ahead.

    Sunset

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,748
    edited December 2018
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    HLB mentioned above that “they”, I assume mo’s, shouldn’t put a time limit on people after they are dx’ed. That is so true! Being told that you have X number of months to live must create an incredible emotional roller coaster. There are many possibilities and many unknowns with bc. Why start off by telling a patient to start putting her foot in the grave as soon as mets are dx’ed?

  • HLB
    HLB Member Posts: 740
    edited December 2018
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    Yes exbrnxgrl that is what I meant and you are right! At my first Mets appointment my dad asked about prognosis and I interrupted so he would not say anything. I did NOT want a certain number in my head dragging me down for God knows how long! Based on what I've read in the past 6+ years, it's not just that they are wrong with a few lucky people, they are almost always wrong!

  • Partyoffive
    Partyoffive Member Posts: 53
    edited December 2018
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    hi dorimak: it’s been 5 1/2 years for me. Diagnosed de nova at 43 with lots of bone mets and have been stable since diagnosis and have been on just tamoxifen and xgeva.

    Kristin

  • lulubee
    lulubee Member Posts: 903
    edited December 2018
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    11.5 years since initial dx, 8+ years at Stage IV... however, like Sandilee, when my bone mets showed up three years after a Stage I dx, they were all over the place which indicates it was already in my blood right out of the gate. So I tend to think of it as 11.5 years overall.

    Mets have also popped up in my common bile duct, an ovary, and my pericardium over the years, and a couple of those episodes put my life in real jeopardy, but we managed to put out those fires and get me stable. Right now, as far as I know, I'm back to bone mets only. But they are in every dang bone.

  • divinemrsm
    divinemrsm Member Posts: 6,003
    edited December 2018
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    Eight years ago today, I felt the lump in my breast and within weeks learned it was mbc—mets to several areas of bone. [I don't like to call it an anniversary which to me sounds celebratory. But I mark this date as when I began dealing with mbc although how long it had already been metastatic, I'll never know.]

    Since having a bunch of big treatments the first year, I remain stable taking daily Arimidex.

    I always find it uplifting to read about others' longevity dealing with mbc on this forum.

  • wallan
    wallan Member Posts: 192
    edited December 2018
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    I am amazed and awed at the strength you guys have and share living with MBC. How inspiring.

    Happy Holidays to you all.

    wallan

  • dorimak
    dorimak Member Posts: 89
    edited December 2018
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    Thank you all for responding! So encouraging for those of us in the earlier stages. My MO says "you're going to be fine...we have a lot of options" but I get discouraged when something fails me. My previous MO also said that they're coming out with new treatments all the time. I wish you all peace love and healing for the holidays and for 20019!

  • cure-ious
    cure-ious Member Posts: 2,735
    edited December 2018
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    DivineMrsM, you must have the slowest laziest cancer ever!!! Thanks for sharing your incredibly inspiring story!

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited December 2018
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    2005 was the original diagnosis.... in 2010 we found my first mets presentation in soft tissue.... 2015 it found its way into my bones. Yes, a slow and lazy cancer and a vigilant medical team, along with a stubborn and compliant patient.

    *susan*

  • tina2
    tina2 Member Posts: 757
    edited December 2018
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    Susan,

    "Stubborn and compliant"--that's so you. Happy Holidays to you and your family!

    Tina

  • ninaca
    ninaca Member Posts: 228
    edited December 2018
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    HI Everyone- I was diagnosed with BC 20 years ago, MBC 17 years ago.

    My Initial BC diagnosis was 1998, but then MBC liver met in 2001. I then had 14 great years on femara (liver met disappeared) I was no longer considered MBC but I knew I had circulating cancer cells somewhere in my blood. Liver met again in 2015 just in time to take advantage of the "just on the market" ibrance/fasloddx duo. I had surgery for the liver met in 2015 but markers are now beginning to rise again, CT scan in a month or so. The idea is to stay around long enough for the next generation of effective medication. I must admit when I got the first MBC diagnosis I looked for people who had survived and was surprised to find several people that gave me hope. I found hearing from survivors is very helpful.

    Happy Holidays to all. HUGS

  • nbnotes
    nbnotes Member Posts: 338
    edited December 2018
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    6 1/2 years -- really stage IV de novo that was originally thought to be stage 1 until a ptscan pre-chemo. Had 3 years NED on Arimidex after BMX, 6 cycles of AC, & hysterectomy. Relatively small amount of cancer the last 2 1/2 years that has gone through a few treatments but the Xeloda right now seems to be doing very well. I teach full-time at one college on campus & adjunct online for 3-4 others and have checked 60+ things off of my living list through traveling, etc.

  • divinemrsm
    divinemrsm Member Posts: 6,003
    edited December 2018
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    I will add to the conversation about doctors who offer some kind of time frame to their patients newly diagnsosed with mbc. On the one hand, I think it is vital to know the reality and seriousness of the disease at this stage. Doctors want the patient to understand its ramifications. On the other hand, I think a doctor can explain the seriousness and still keep the window of hope open to their patient.

    In my case, going into that doctor appointment to get those PET scan results, I knew metastatic meant cancer spread beyond the breast, that it was not curable and worse. So when the doctor delivered the news, I asked what kind of lifespan I could expect. She said, “With treatment, you could live years." Now that was a pretty open-ended response, and a good one, I think. Still, as the blood ran cold through my veins and the most intense fear I'd ever felt shook me to my core, I had the presence of mind to demand, “DEFINE YEARS." And she said, “Five, ten, fifteen..." and she told me of one of her patients who was still around after 15 years. Her answer gave me something my brain could latch on to, the hope of being one of those outliers. A doctor who doesn't offer that hope does a diservice to their patients.

    Then there are the shitty doctors. A number of years later, I had to go to a designated doctor to qualify for disability, amd since I had been living with the disease for over 5 years, stable without any progression, he arrogantly told me I probably only had arthritis, that women only live 3 to 5 years with metastatic breast cancer. Dr. Denial here never so much as looked at a single cd of all my scans that he requested I bring to the appointment, nor read the reports. I was denied the disability, but I got a lawyer and was eventually approved.

    Breast cancer doctors need to be aware of the big picture and the update picture of the disease and these days there is no excuse with the proliferation of information so readily available.

  • pajim
    pajim Member Posts: 930
    edited December 2018
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    Coming up on six years for me. I finally start iv chemo next month (boo hiss). I expect I have at least 3-5 more years left. Maybe more if one of these chemos lasts a long time.

    I was diagnosed with mets just before my 45th birthday. My onc and I were discussing long-term thinking and I asked him "how long-term?" He told me they could get me to 50 in good shape (yep, they did) but that 60 didn't look good. Compared to some oncs that's pretty (a) on the money and (b) optimistic.

    I've already taken two drugs that weren't on the market when I was diagnosed with mets. There will be more. . .

  • cure-ious
    cure-ious Member Posts: 2,735
    edited December 2018
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    Pajim, I know it gets very unclear what to try as we go along, but have you sought out a second opinion before taking the IV chemo? What about a clinical trial? Do you know if you have the PI3K mutation, which might make you a candidate for Alpelisib? CAR-T or immuno in some combo? CDK7 or CDK12 inhibitor? We do have some options, at least in trials, and I'd hope to do better than 4-5 years in hormonal therapy followed by 3-5 years in chemo( even as I do appreciate that I'd be lucky to even get that!). Many trials allow for one or two chemo treatments in stage IV, but not more than that...

  • pajim
    pajim Member Posts: 930
    edited December 2018
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    Right now CAR-T is something for which you need to have done several lines of chemo. They totally ablate your immune system in order to put in the new cells. And you still have to be well enough to travel -- there are no CAR-T programs where I live. I'm planning on exploring one of those after the next two lines.

    Whilst I hate to burst anyone's bubble, immunotherapy isn't working for ER+ women. if you happen to have a tumor which expresses PD1 or PDL-1 you might have a shot. But right now that's still in trials. I failed a screen for one of those.

    I believe (and live!) that each time you need a new treatment you should look at a trial. Or more. But you have to be lucky enough to have one open for which you qualify. It's not as easy as it should be.

  • cure-ious
    cure-ious Member Posts: 2,735
    edited December 2018
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    Yeah, supposedly CDK4,6 inhibitors up-regulate PDL1 expression, but we don't have data yet on whether that is sufficient to render cells sensitive to immunotherapy.

    I was just noticing at UCSF they are still doing the trial testing Abemaciclib with Keytruda, and also they have a MORPHEU-HR+ trial that is testing immuno 2- and 3- way combinations together with each other or with Faslodex for those progressing after first or secondline therapy. And it really should work to have a CDK12 inhibitor in terms of making cold cancers sensitive to immuno, but you are right, will these work and how well, stay tuned...

    https://clinicaltrials.ucsf.edu/trial/NCT03280563