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8 year survivor stage 4!!!!

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13

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  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited July 2019
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    Such a relief to see many long term survivors. Such a great source of hope!!

    Thank you all for sharing!!

  • nbnotes
    nbnotes Member Posts: 338
    edited July 2019
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    Congrats Miriam!

  • Andi67
    Andi67 Member Posts: 314
    edited July 2019
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    I'm so glad I found this thread! Congratulations Julie, thank you for starting it, and love the beach pictures! I am 51 as well and have two boys - both in college. I am coming up on 7 years this fall, so I too was afraid I wouldn't see them graduate! Now one is about to graduate from college (at least, that is what he says....) and the other is halfway there!

    Congrats to everyone else as well! I LOVE the pictures! It makes me feel like I really "know" everyone! Tina, hilarious comment about staying in the closet. I don't think I have a recent picture to post this evening, but I will try to dig one up.

    Oh, and I have mets to bones and liver. EVERYWHERE on my spine, hips, sternum etc etc etc... and two spots on my liver. Aggressive radiation and chemo, and continued Herceptin (no Perjeta - dropped it) and I have been NED (knock super hard on wood) for six years...… I feel very grateful every day, but I really feel happy and relieved and doubly grateful when I see so many others that are doing so well too. It gives me hope that maybe, just maybe the statistics are wrong, or at least way outdated and that we all have lot of life left in us!

    XO

    Andi

  • Andi67
    Andi67 Member Posts: 314
    edited July 2019
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    image

    I found one! A little outdated. Me and my mom at my cousins wedding at an Oregon winery last fall and yes, that is a big glass of wine in my hand. :)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,761
    edited July 2019
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    andi,

    You look fabulous and I hope that you thoroughly enjoyed every bit of that wine 🍷.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019
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    Andi What an inspiring post. NED from liver mets and all those bone mets for six years!!!!! I want what you're having, the NED and the wine. 💞

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019
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    jnh How large was your mediastinal lymph node when it caused your vocal chord to be paralyzed?

    I found out on Monday that my TX Xeloda did not work at all for the past 3 months. My liver mets are much worse with ten new one also. My mediastinal node is also worse. I'm really wondering how big it has to be before it presses on the nerve like yours did. The PET report says it's only 1 cm now. What was your first symptoms? Loss of your voice? Did a new TX make it get smaller?

    I'm full of questions. I don't know yet what TX my MO will suggest. My history of TX is so extensive she's reviewing everything before she decides. She'll call tomorrow.

  • JFL
    JFL Member Posts: 1,373
    edited July 2019
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    Jnh, congrats on your milestone! It is encouraging to hear from someone with organ mets who has been through a good number of treatment lines and nevertheless, lived a long time. I hope to follow in your footsteps, making it to 8+ years. We have a lot of similarities in our stories - we share the same name :), were both diagnosed young with young kids, have been through many treatments, both work full time and pretty much never miss a day of work due to dx and I happen to live close to Hollywood Beach, just a few beaches south of there. It sounds like you are visiting Hollywood Beach and do not live there, right? I will hit the 5-year mark later this year with extensive liver and bone mets from the get go.

    Also congrats to Miriam and Tina being right up there as well!

  • Deedi
    Deedi Member Posts: 27
    edited July 2019
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    Congratulations! Thank you for sharing. This is so inspiring to me. Diagnosed with metastatic tnbc to lungs in January. So glad to hear that it is possible

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019
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    Welcome Deedi. This thread gives me hope, also. I'm 2 1/2 years out with mets to lung, mediastinal and liver.

    I just found out I have to have my port replaced before I can start Gem/Carb. More waiting. UGH💞

  • Deedi
    Deedi Member Posts: 27
    edited July 2019
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    thank you Grannax2! I have been hovering this site for some time and hope to become more active. I'm very interested in the Gem/carb treatment. From what I have read here this treatment has worked we well for some people. I hate to hear about the port. I hope all goes well. My port has caused issues for me as well. I had a blood clot causing my arm to turn blue and swell. Scared me!! Now on blood thinners. I'm also happy that you get t the gem/carb treatment. Is that a trial? I Will be praying it takes you to 8+ years!!!

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2019
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    deedi I started a Gem/ Carb thread. Liwi is on the same TX. I hope all who are or have Ben on it will post there. Looks like my dye study/ port revision will be done on Tuesday by my own IR, Wed Gem/ Carb. Hope we do well and that anyone on that TX will post there, too.💞

  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited July 2019
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    Hi all

    I haven't posted for a very long time but couldn't resist celebrating all the good news. I also celebrated my son's high school graduation this year and I am enjoying all the steps he is taking into adulthood; first job, enrolling in college, first car. I celebrated my daughters college graduation last year.

    Feeling blessed with all of you. Greatful to the science that is helping us and the fight we and our loved ones are putting forward to gain new celebrations.

    Love to all

    Mary

    PS current treatment is verzinio and falsodex but can't seem to update.

  • divinemrsm
    divinemrsm Member Posts: 6,008
    edited July 2019
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    3-16,I am thrilled to hear about the wonderful milestones you’re getting to experience with your son as well as your daughter. Thanks for the updates!


  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited July 2019
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    Thank you divine Mrs m. Wonderful to see your beautiful picture.

  • jacque1102
    jacque1102 Member Posts: 14
    edited July 2019
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    Hello all,

    Happy to hear about all of the long term survivors with Stage 4. Indeed, miraculous. I, too, was diagnosed with HER2+++ Inflammatory breast cancer with a nasty met to the liver the size 4.6 cm. I have been NED since August 2012. Remain only on Herceptin. It will be 8 years for me this October (2019).

    Peace to all,

    J

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,761
    edited August 2019
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    Congrats Jacque! I hope this list gets really, really long 😊

  • KSkier
    KSkier Member Posts: 16
    edited August 2019
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    Congratulations! You sure are keeping those mets busy with all those treatment changes. Grateful for your story, your sons, your bff...Keep up the good work!

  • heidihill
    heidihill Member Posts: 1,856
    edited August 2019
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    image

    Loving the pics and posts. Here's my contribution. Married 25 years and 12 years out!

    Julie and all, we are a new generation of metsers and our stories are full of hope! Let's keep at it!

  • divinemrsm
    divinemrsm Member Posts: 6,008
    edited August 2019
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    JNH, Philly, A Beautiful Sunset, SaniBeach, Grannax, Andi....I love aaaall the photos of you gorgeous ladies! And there is Heidihill, too! ....I love seeing your beautiful face after reading all of your many wonderful, thoughtful & inspiring posts over the years. ♥️ Congrats on 25 years of marriage! And your longevity dealing with this disease,



  • Buddhahead
    Buddhahead Member Posts: 19
    edited August 2019
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    Congrats, Julie. I'll hit the 8 year mark in Feb. 2020. :-) It's possible!

  • Andi67
    Andi67 Member Posts: 314
    edited August 2019
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    Congrats to everyone! Very inspiring and hopeful. Love seeing your beautiful face after all these years, Heidi!

    XO

    Andi

  • EMAW
    EMAW Member Posts: 99
    edited December 2019
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    Jst hit the 9-year mark on Nov.19th!

    DX’d in Nov.2010 Mets to liver de novo.

    Should I start a new thread? Aren’t we grateful to still be here?!

  • daywalker
    daywalker Member Posts: 77
    edited December 2019
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    Mirriam, I'm so happy and grateful that you are still here! Almost ten years, that's awesome xxc

  • elderberry
    elderberry Member Posts: 1,058
    edited December 2019
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    Miriam, WOW -- keep ticking up those months and years. If you can do nine then surely you'll make it ten!!

    Andi- yeah - have a glass of wine. My MO said when I asked if i could have wine or maybe even a martini "Why do you think we keep you going? So you can enjoy life"

    All of you ladies who posted your pics are gorgeous. I have a presentable face but am not photogenic -- at all!! But maybe I'll get a decent one taken and will post.

    I come and read all you posts to give me courage to go on and hope that I can indeed go on.

    Peace and Plenty in 2020.

    Bright Blessings from me to you!!



  • anotherone
    anotherone Member Posts: 545
    edited December 2019
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    I had a fall out with my 15 yo daughter today - I went to work in the morning ( just 3 hours shift) having asked her to get my dad peeling veggies and do the dishes I the kitchen . I came home at midday with nothing having been done 😧, her coming out of her bedroom after I walked in and starting to peel a potato herself ( with a speed of a snail of course as she does not have practice). I asked her to tidy the kitchen as it was not time effective for her to peel potatoes and she went on the offensive how I should have been grateful she was doing something and was not "horrinle" to her. To my credit I did not say anything , I just went elsewhere in the house doing something else while crying. Eventually she admitted she was wrong in doing nothing, wrong in her attitude after and said she knows the right things, just for some reason she does not do it.

    A few years later we are listening to King's quoire Christmas carols and waiting for all 3 of us to be free at the same time to open our presents. I am thinking it can be painful but how happy I am to be next to my daughter when she is growing up ... My exes cousin's 19 yo daughter had an argument with her mother, left home and happened to be run over by a train.. Her poor parents have been to a clairvoyant trying to establish what has happened - they were told it was an unfortunate accident . In comparison to that tragedy dare I say our issues pale if not into insignificance st least considerably .

    Merry Christmas to you all my fellow mortal mothers 😘😘

  • dnguyen2020
    dnguyen2020 Member Posts: 1
    edited January 2020
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    Congrats!!!!! That's wonderful.... and give us lots of hope!!!

    May I know which hospital are you getting treatment at?

  • cure-ious
    cure-ious Member Posts: 2,736
    edited February 2020
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    jnh- original cancer was triple-negative but your treatments include AIs and her2+ meds- did it switch subtypes to both ER+ and Her2+? and it looks like Faslodex combos would still be an option for you? eights years with liver/lung mets is remarkable!! Maybe you have a super immune system!!

  • moth
    moth Member Posts: 3,293
    edited February 2020
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    This is the thread I needed to read today. Thx for bumping it, Cure-ious!

    Congrats to all the long termers and thx for coming to share your story and encourage us.

  • dlittkemann
    dlittkemann Member Posts: 91
    edited March 2020
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    Wow so glad I found this post. Newly diagnosed with bone mets, tnbc, so I was feeling hopeless. There are not many treatments for this type. Praying what I start Wed will give me some years. I’m 45 with a 5 year old and all I want is to be here til he’s 18. Well 20 would be amazing. Needed to read all these great stories as I head back to treatment again :-( hugs to all of yo