Women Stage IV past 5 years

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  • Kathy36
    Kathy36 Member Posts: 85
    edited May 2009

    Kristom, I was diagnosed with mets in January 1993. My cancer had spread so fast at that time and was so impossible to control, my doctor said she thought I had a year or two. It's now almost sixteen and half years later and I feel really good. With cancer, nobody can say for sure what's going to happen. Sometimes what happens is good. Don't give up hope, take it one day at a time, and may those those one-days add up to many, many years. xoxo Kathy 

  • Priscilla0929
    Priscilla0929 Member Posts: 90
    edited July 2011

    I saw this and was wondering how you r? I have been looking for someone who is surviving this for longer than 5 years.  I have two little kids (3 and 1) and that is the worst part for me.  I really hope you are doing well and please know how much your post meant for me to read.

  • Priscilla0929
    Priscilla0929 Member Posts: 90
    edited July 2011

    Please please disregard my post---it was an error.  I wish I could delete my post.  I meant to send a message not post a reply. I realize this is an older thread after I made the mistake. I am truly sorry if this upset anyone.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited July 2011

    No mets is good but bone mets is the best of no good.  Kathy Rich, one of our members but also a well-known novelist, is on year 18.  I have a friend who 12 years ago had mets to the brain.  She's NED.

    You just never know.   

  • Xavo
    Xavo Member Posts: 364
    edited April 2018

    Bump. (This very encouraging thread has been burried for years. New entries please! Make the list long! My self have only past 3 years. Being stable, l am looking forward to passing the 5 year threshold in 22 months. Meanwhile, please go slow, my precious time, my life.) 

  • Partyoffive
    Partyoffive Member Posts: 188
    edited April 2018

    I am five years next month-never been ned but have been stable with multiple bone mets and have been on my original medicine(tamoxifen)the entire time. I have this weird thing with waiting until May to claim another year but it’s close enough. I work out every day and pretty much livelife as I used to. Hope this gives someone hope that they can live “with” this disease.

    Kristin

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2018

    Almost 7 years out from my bone mets dx. I have absolutely no idea why I’ve done so well. No special diets,life style changes etc. I have been on an AI, first Arimidex, now Femara. I also had rads to upper femur. Outliers like myself, exist, but it’s still a mystery as to why.

  • bigbhome
    bigbhome Member Posts: 840
    edited April 2018

    Six years next month with lots of bone mets. There are many of us out there!

  • lulubee
    lulubee Member Posts: 1,493
    edited April 2018

    This summer will be 11 years since original dx. Took three years for mets to show up, so I’ve officially been Stage IV for 8 years— however, I suspect the horse was out of the barn from the get-go, and it just took three years to become visible. I have ups and downs like we all do, but I am determined to enjoy whatever life I am given and to dwell in gratitude and light. I have deep faith in God which I approach as a thread of spiritual practice that runs throughout the day, and that keeps me strong and serene. I pray for mercy, courage, and grace. When I neglect to pray and to give thanks and love and honor, my heart grows anxious and full of sorrows, and then I can feel my overall health start to slip. I don’t know why I have done as well as I have—I’ve had some crazy close calls where I could have died but then I rebounded. It’s a wild rollercoaster ride and I figure I can either shake and shriek from fright or try to relax and not hold on so tight and see if I can enjoy the ride.

  • scoobie
    scoobie Member Posts: 30
    edited April 2018

    Today is the 5th anniversary of my diagnosis with de novo metastatic breast cancer (ER+/PR+/Her2-). Liver and lung mets from the start and brain mets added to the mix 18 months ago (but probably there from the start). I'm so happy to be joining the 5+ years crowd!

    Like others, I have been on many treatments: Tamoxifen (3 months), Faslodex (3 months), Xeloda (9 months), Doxil (24 months), Talazoparib (3 months), Ibrance (3 months), and Taxol (15 months). I don't drink alcohol anymore and try to exercise every day. Other than that, I have no explanation for my good luck.

    I hope my brief story provides encouragement to others just as I have been encouraged by the many stories of long term survivors I have read here. Best wishes to all.

  • Lynne
    Lynne Member Posts: 641
    edited April 2018

    I was originally diagnosed stage 1 IDC, ER and PR+, HER 2-, in 2005 (13 years ago, found on a routine mammogram) and seven years later Stage 4 in 2012 (after having back pain, found in my spine and lung, now also lots of other bones and liver). That makes 6 years Stage 4!

    I've been on Faslodex 1 1/2 years, Femara 3 mos, Xeloda 2 1/2 years, Ibrance and Femara 6 mos, Doxil 3 mos, and have currently been on Taxotere, for nearly a year (first time I've lost my hair).

    I still drink (not as much as I used to, which is maybe once a week instead of a few days a week) and I eat whatever I want to. I don't really exercise (does walking up the 13 steps to my 2nd floor count?) either. I have no idea why I'm still around, but am glad that I am. I think my husband of almost 35 years (we've been together since high school), our 4 children (2 in their early 30's, and 2 in their 20s), and our 3 grandchildren (8 1/2, 7, and 5) would all miss me, as well as my Mom and 3 sisters (and his family as well). I thought I would be gone in a year and a half (that's what my oncologist told me what the average lifespan was once diagnosed Stage 4, after I asked her), she did tell me she had a couple of patients that were 10 years out and one was still working (I stopped about 5 years ago). There are many of us on here, and there is always hope. We are living with cancer, not dying from.

    Hugs to all!

    Lynne

  • KSkier
    KSkier Member Posts: 467
    edited April 2018
  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2018
  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited April 2018

    Thank all of you for posting. Keep going. I had widespread liver mets at dx with tumor cells in lung arterioles, plus a debatable T12 met. Need to see other liver metsers posting.


  • dawny
    dawny Member Posts: 1,126
    edited April 2018
  • sandilee
    sandilee Member Posts: 1,843
    edited April 2018

    Hi- I haven't posted in awhile, but my bone mets were diagnosed in 2011, liver mets in 2014, and I am still here. So that is 7 years for me with stage IV. I'm counting on being around for several more years.

  • pajim
    pajim Member Posts: 2,785
    edited April 2018

    I passed 5 years two months ago. Still don't have a port. Have gained 30 pounds but otherwise live much the same life as before. Wooo!

    These days 5+ years is very common and I'm so happy for that, both for me and for all of you.

  • SusanR
    SusanR Member Posts: 598
    edited April 2018

    9+ years here as Stage IV.  3 years on Femara, 5 years on Faslodex, Ibrance and Xeloda failed me last year, currently 8 months on Abraxane with great results.  

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2018

    sandilee, I haven't seen you here in ages! You were one of my first friends here. You'll remember me as ...... I hadto change my name for privacy reasons. We were both dxd in 2011., although I didn't start on BCO until 2014. So I'm going on 7 years, as well. Nice to see you!

    It's so good to see a lot of 10 + out there. Gives me more hope.

    Sunset

  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited April 2018

    My mom has been living with Stage IV metastatic breast cancer for the past 17 years (25 years since original diagnosis).

  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2018

    YoungTurk, your mom is amazing!!

  • BigPeaches
    BigPeaches Member Posts: 266
    edited April 2018

    Wow, did I need to read this thread today!!! Thank you ladies for posting your stories!!

  • bloomingdalechik
    bloomingdalechik Member Posts: 21
    edited April 2018

    Hi! I know it's so difficult but take everything one day at a time. I've had Stage IV mets to the bone for over three years! I'm still on my first line treatment and now scanning over 6 months (soon to scan every 9 months). Those stats are a composite of a bell curve, but you really don't know you will individually fare. Keep staying present; it'll get easier.

  • Kjones13
    Kjones13 Member Posts: 1,520
    edited April 2018

    5 1/2 years stage 4 de novo with mets to spine and liver. Still on first line of treatment (which I have in about 6 hours)! I have side effects from the meds and then I take meds for the side effects and have more side effects....but other than that, I have been blessed to watch my kiddos grow!

  • gonegirl
    gonegirl Member Posts: 1,871
    edited May 2018

    I was diagnosed with HER2+ mets all over liver January 2012. I had symptoms since June 2011 (thought was gallbladder), so count mets since June 2011. So it's been almost 7 years. I've been very, very lucky in that the cancer has been responding to treatment. And I've fought hard to get good care. I collect pennies for good luck and knock on a lot of wood. Probably doesn't do anything but it makes me feel better. Good to others here.

    Susan

  • Bunsuela
    Bunsuela Member Posts: 8
    edited May 2018

    It’s been almost seven years since my diagnosis, and I strongly suspect that I had developed the bone and lung mets at least a year before that. I’ve been able to continue working through treatment, and have had a good quality of life. My MO’s PA told me that a patient with a diagnosis like mine made it ten years. But with all of the new treatments coming, along with genomic testing, I would bet that longer survival times will become less rare, and five years will become ten, and ten years will become fifteen. Or twenty. I don’t follow a radical diet, and both of my professions are relatively high stress. I am not particularly spiritual or religious. So, if a junk food eating, stressed out average Jane like me can live way longer than the stats suggest, so can a lot of women. (And never forget that those stats are >5 years old by the time we are given them.)



  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2018

    Bunsuela, did you also have liver mets in 2011? Wow. I noticed you started with Gemzar..interesting. i also noticed you had Xeloda twice. Your zest for life just made my day.

  • MameMe
    MameMe Member Posts: 425
    edited May 2018

    I am so glad this thread was resurrected! I am in my 5th year now, and getting adjusted to some recent progression and uncertainty. I know that once I get used to whatever is going on, I will be focused more on my life than on having cancer. No matter what, I want to make the most of my life as long as it will have me. Bunsuela, you rock

  • Kimchee
    Kimchee Member Posts: 105
    edited May 2018

    How many of you drink alcohol ? Cause I need a night out bad !!!

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2018

    My MO said an occasional glass of wine was fine for me..just not the whole bottle. Ha. ( I love wine..that is why I asked my MO). I rarely drink hard liquor anymore. Just discuss with your MO in case any consumed alcohol could interfere with your treatments.

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