Stage IV NED crew : let's support each other

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2017

    Thank you, Heidi. Unraveling the mystery of why small number of women are long term survivors of stage IV, would be a great boon to MBC patients. Big congrats on your upcoming 10 year anniversary. I just hit the 6 year mark myself. I periodically get pm's from stage IV women asking about my tx and what I've done to survive this long while maintaining very good QOL. I hate not having a clear answer or any answer for that matter, to give them. I wish I did

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited July 2017

    Awesome article!

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2017

    congrats on 6 years, exbrnxgrl!!!

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  • LisaY
    LisaY Member Posts: 48
    edited August 2017

    Heidi, I will hold onto that article, thanks for sharing it! I gather strength from knowing that some will live for a long time with this disease. Even if it's not me, it goes to show that it's anything can happen with this disease.

    This month marks one month since my diagnosis with Stage IV de novo breast cancer. I got my first set of post-chemo scans back, and they looked very good. The reports said no evidence of active tumors, bone lesions are stable or healing. My oncologist was very happy with them. I feel like it may be tempting fate to say I'm NED, but things are definitely looking stable for now.

    I've started a blog, partly as a creative outlet and partly to find a way to answer all the questions from family, friends, vague acquaintances, etc, who want to know how I'm doing. I also write about cooking with a focus on finding easy recipes to feed a family on an anti-cancer diet. Here's the link to the post that I wrote reflecting back on one year with MBC:

    https://breathinginbreathingoutblog.wordpress.com/2017/07/18/lesson-2-make-friends-with-your-cancer/

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  • RosePenny
    RosePenny Member Posts: 24
    edited August 2017

    Go for it! Live each day, enjoy each day, don't waste time worrying. What is the point of staying around for years, if those years are spent miserable. Regrets are much more about not doing things we want to do than doing them. (Speaking from 60 years of experience,lol) None of us have an expiry date stamped on our feet. 6 years out from my original diagnosis and 4 since my spread. Still here, still making plans, still enjoying attaining goals.

    hugs Rose

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited August 2017

    Has anyone ever had a fibrin sheath on their port. I've had a problem drawing blood, but not infusing treatment. I was just wondering what to expect.

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  • ChelleG
    ChelleG Member Posts: 540
    edited September 2017

    Hello!!! May I join you? I have recently learned that I am NED!!!!

    ChelleG.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited September 2017

    Yay ChelleG!!! Congratulations!! Welcome aboard!!

    Love n hugs. Chrissy

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  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2017

    Great news, ChelleG!

    Tina

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited September 2017

    Hi Chelle. I didn't get a chance to congratulate you on the other thread, but that's awesome news. Congratulations!

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited September 2017

    Big welcome hugs (and infinite exclamation marks, sorry keyboard is not working properly), Chelle.

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  • ChelleG
    ChelleG Member Posts: 540
    edited September 2017

    Thank you for your warm welcome!!!! I can hardly believe that I made it here! I am on my first line tx. Was dx.stage IV de novo in 2015. I was reminded on another thread that this scan could be a fluke. Because becoming NED on tamoxifen only, is an exceptionally unusual result!

    Due to her comments,I called my nurse and care coordinator to explain the results. She has worked with bc patients exclusively for 18 yrs. Her only explanation was, it is a fact, I am NED,she has rarely seen this response,but that she has seen it! I feel like I won the lottery!

    I'm curious to know some of your stories. How much of a roller coaster ride has it been? The tamoxifen does have some miserable se's for me. But totally doable,when it works!!!!

    I look forward to getting to know you!

    Love Chelle.

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  • ChelleG
    ChelleG Member Posts: 540
    edited September 2017

    Bjsmiller- Hooray!! I did not know that you were NED!!! Wonderful!!! Are you still living up in Summit? We should get together! Kathryn(iwrite) is here now too. We could all meet up somewhere!

    Chelle.

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited September 2017

    Hi Chelle. Yes, I am still in Summit. That would be fun for us all to meet up! I didn't realize Keenesburg is where you moved. My mother lived there for many years as a child and it's still dear to her heart!

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited September 2017

    http://www.mbcn.org/2016/07/21/rita-arditti-lived-over-30-years-with-mbc/

    Chelle, here is a story of a woman who took Tamoxifen for 17 years.

    We have a lot more options now than she did, so this may add to the rarity of your case. I am on tamox too so I like to think it is effective. ;-)  I did have AIs beforehand but side effects were piling up. 


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  • ChelleG
    ChelleG Member Posts: 540
    edited September 2017

    Thank you Heidi!!! I am happy to see that there are many of us!!!! May we continue to have exceptional and unusual responses to the tx!!

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited September 2017

    Exactly, Chelle. You are an exceptional responder and that's a celebration! What may be for most is not always the same for one.

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  • ChelleG
    ChelleG Member Posts: 540
    edited September 2017

    Hello everybody,

    It has taken a couple of weeks for this scan result to truly penetrate my being. I must say, emotionally this is very confusing. I am so very happy to be NED. Yet,it comes with a heart full of guilt.

    Most of you must know Lita. She is so strong an excellent writer,funny and a soul so vibrant,that it shines through her posts. She is dealing with so much right now. Why did God not chose her? He chose boring me instead!!! Why?

    My family and I are very thankful,don't get me wrong. And I know life and death are not fair. Fair is for fairy tales.

    Hugs to all. Chelle

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited September 2017

    Great news for you Chelle! Unfortunately we all have different paths to tread with this disease.

    Love n hugs. Chrissy

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2017

    Chelle,

    Congratulations! As for guilt, it's best left for situations where we have some control. Sadly, with bc, we have none. Each of our lives is valuable. None of us is more deserving or less deserving when it comes to the survival game; a game that none of us chose to play.

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  • screech
    screech Member Posts: 212
    edited October 2017

    Congratulations Chelle! And very nice to see some familiar names, Heidi, exbrnxgrl, Cafelover, and so many others. Just checking in. I just had a pet/ct-first in 11 months because the oncologist gave me a little room to breathe, then I had vacation, then..... and I am still NED. I'm sorry I don't really come on to post much, but one of the things I did in an effort to re-group was I unplugged my computer. It's amazing how much I get done now!!!!! I promise to check in once in a while though!

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  • singlemom1
    singlemom1 Member Posts: 434
    edited October 2017

    Great news Screech!! Congratulations!!

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  • Kkrenz
    Kkrenz Member Posts: 100
    edited October 2017

    After 6 months of taxotere, herceptin and perjeta, I have been officially declared NED. I feel extremely blessed.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited October 2017

    Good news. Brava, ladies!

    Tina

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  • ChelleG
    ChelleG Member Posts: 540
    edited October 2017

    Hooray kkrenz!!! May it last forever!!!

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  • singlemom1
    singlemom1 Member Posts: 434
    edited October 2017

    Great news kkrentz!

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited October 2017

    Had another scan last week and the news is all good, so still hanging on to NED. Hugs to you all.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    👏💐👏💐

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited October 2017

    Caren, congratulations on the impending birth of another grand daughter! Such good news, and so it goes...

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    Thank you! I'm very excited

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