8 year survivor stage 4!!!!

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2019

    as are you, my fellow Philly girl !

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  • jnh
    jnh Member Posts: 120
    edited July 2019

    philly and sunset, LOVE the pictures! You are both beautiful !

    Isn’t it great to be enjoying every minute!

    Beach is Hollywood Beach, Near Ft. Lauderdale! Water was amazingly clear and warm!

    Julie

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2019

    Julie, my daughter just graduated HS as well. She starts UCLA in the fall. My son is starting his 5th year of college (he's on the long plan... lol. ) Grateful to bear witness, and see them into adulthood.

    Stefani


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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2019

    Me in my kitchen after coming home from getting my hair done.


    image


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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    Everybody is so beautiful, inside and out. Love the pics. I'll send some too.

    Yes, I guess I am 18 years out with MBC. I had not thought about it that way before.

    I think we are up to six of us! To me, to get to even four years with organ mets would be a miracle. These days bone Mets are treated so much differently than back in 2000. And, with much better results.💞

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited July 2019

    image

    Yeah, I am approaching 3 years with liver mets.

    Somehow it missed my bones..which I guess would have been a better survival time for me. The tumor cells traveled from liver to my lung arterioles, but it is not considered lung mets (tumor emboli syndrome).

    Just don't see too many posters with livers mets that are HR positive and HER negative with 5 years+.

    If you are out there..it would be comforting to hear from you.

    Photo is me hiking in Dinosaur National Park.

    S

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  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited July 2019

    SandiBeach, it has been 7 years since I was diagnosed with liver and bone mets in July, 2012. (I am HR positive, HER negative.) Have never been NED.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited July 2019

    Thank you Schnauzermom!!

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    My whole family at Easter this year From left my SIL, my daughter, me, my grandchildren, my DIL and my son

    image

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    Me in NYC in February Getting all glamorous for the runway I was invited to go with Say Yes to Hope foundation to be one of the survivor models at SMGlobal Catwalk in NYC Samina Mogul is an international designer who has allowed “YES” to shine in her spotlight. We are all stage IV cancer survivors Most have mets to the liver from colon cancer Now there are some MBC, too My first modeling with Yes was in Dallas last October in May I got to go on a weekend retreat from cancer in November I will do Dallas again ( This is not the real me, LoL)

    image

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  • candy-678
    candy-678 Member Posts: 3,950
    edited July 2019

    Beautiful pics all !!!!! Sandibeach- I too want to hear of organ metsters (Liver) and longer survival times--I am 2 years into this. Thank you Schnauzermom I needed to hear from you. We need to find out the "secret" you all have for beating the odds.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2019

    Chiming in as another member surviving--no, prevailing--for eight years with MBC. Tomorrow, there'll be more of us!

    Tina

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  • jnh
    jnh Member Posts: 120
    edited July 2019

    Just for everyone’s information, I have had bone mets, lung mets, liver mets, mediastinal lymph node mets and peritoneal abdominal mets.

    Over the 8 years, the pathology has changed back and forth. It has been triple-negative, HR+ Her2nu-, and HR- Her2nu +. Different treatments have gotten me to NED before, but then cancer grows. I have also been stable before, but then cancer grew.

    My liver mets were Her2nu+ and Kadcyla was what got rid of them.

    Most recently, I have had a mixed response to treatment, so we think I have two pathologies present at once.

    IT IS SO WONDERFUL to see photographs of all of you!! I am thankful to get such wonderful inspiration from all of you! May we all be here for many years to come, like our friend, Grannx2!!

    Julie

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited July 2019

    gorgeous people!! Beautiful sisters!!!

    ❤️🧡💛💚💙💜🖤💜❤️🧡💛💚💙💜🖤

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2019

    Congrats Jnh! How wonderful and inspiring to all of us!

    SandiBeach - Next week (7/17) is 7 years for me with mets to liver. I did get to NED for 3 1/2 years after aggressively treating it at first. My mets have all been in the liver and some lymph nodes close to the liver.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited July 2019

    JNH..thank you for sharing your journey..you have been all over the place with pathology and treatments. Wow.

    nbnotes, so happy to hear from you.

    This is the first time I have posted a photograph of myself on BCO. The only other time was a picture of me and my port that I pm'd to Zarovka. She was having a hard time with her port. I miss her.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    I miss her, too. She was a huge loss for so many of us with liver mets. I actually thought if anyone can find and receive a cure, it would be her. I wish I knew more about what happened at the end. I don't like the word but there was no closure for us. It was such a shock. She was everywhere then she was gone. I think she was three years out. Not sure.💞

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2019

    Ladies who are brave enough to post photos of your gorgeous selves, you rock!

    Tina (still closeted)

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  • Anewbreath
    Anewbreath Member Posts: 125
    edited July 2019

    Congrats to all the beautiful survivors!! Ditto to Candy-678...I want to hear of Organ metsters and long term survivors! NED or stability the struggle is real. This is one brave fight and I admire all that are courageous enough to share and generate hope❤️

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    jnh I have medistinal lymph node involvement too. I usually just say chest but there's one very close to my esophagus. Do you have SE from that one? It's hard to tell because I have reflux too.💞

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  • Simone80
    Simone80 Member Posts: 988
    edited July 2019

    Congrats all! It is so nice to hear women living with MBC for so long. You give us hope.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2019

    Wow! It’s so wonderful to read everyone’s story and see the great pics. I’d also like to thank everyone for their congrats. I’ve hated having my photo taken since I was a child, so not sure I’,, be posting any but you all look great 😊.

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  • jnh
    jnh Member Posts: 120
    edited July 2019

    Grannax2,

    Funny you should ask about mediastinal lymph node. Yes, I had a quite significant side effect! I ended up with a paralyzed vocal chord!!

    At first, my ONC admitted me to the hospital in order to run tests quickly because vocal chord paralysis can be a sign of leptomeningeal mets (in brain or spinal fluid). Thankfully, after 3 MRIs, CT and lumbar puncture (along with extreme fear), we discovered the mediastinal lymph node was 4x it’s size with mets and pushing on the nerve that goes to vocal chords!

    But, I lost my voice. I could talk but I sounded like a raspy Minnie Mouse. I decided to just be grateful it wasn’t in brain.

    This summer, I tried speech therapy and it has been like a miracle! My vocal chord is still paralyzed, but my other vocal chord and muscles are stronger and able to compensate! I sound like ME again!!

    I don’t have much problem with reflux, thankfully.

    Julie

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2019

    Holey moley, Julie, how scary! Glad to hear you've figured out a work-around for your paralyzed vocal chord.

    Tina


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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    Holy Moly is right. I never expected all that could happen. I was thinking , maybe some coughing or choking on food .. Not my voice! You see how much I write but I talk a lot, and love to tell stories. That must have been so hard, I'm so glad to know what do do if it does happen and glad for you to have your voice back. I have had one odd thing in that area, hick-ups. Always starts when I take my first bites of food. Weird.

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  • EMAW
    EMAW Member Posts: 132
    edited July 2019

    Oh! count me in! I just (in May) hit the 8-1/2 year mark, as I was dX’d in Nov.2010!

    Lots of different treatments over the years and not always a piece of cake, but I’m still here and kicking.

    Nice to see you here, Beautiful Sunset and LoveFromPhilly.

    Love to all of you,

    Miriam fro SE Pa

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  • jnh
    jnh Member Posts: 120
    edited July 2019

    grannax2-

    I get hiccups about 10x more frequently than I used to now! Thought it was the paralyzed vocal chord but could be the mediastinal lymph node enlargement! Weird!

    Julie

    PS. Hate hiccups

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  • jnh
    jnh Member Posts: 120
    edited July 2019

    congrats, Miriam!! So glad to hear about your 8.5 years!!!

    Woohooooooo!!

    Julie

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2019

    Congratulations , Miriam!

    So heartening to read about more of us living longer. We are still the minority of stage IV patients, but it is my greatest wish to see that change

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  • TnQuilter
    TnQuilter Member Posts: 6
    edited July 2019

    Thanks for sharing. This gives me lots of hope.

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