Stage IV NED crew : lets support each other
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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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Awesome article!
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congrats on 6 years, exbrnxgrl!!!
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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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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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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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Hello!!! May I join you? I have recently learned that I am NED!!!!
ChelleG.
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Yay ChelleG!!! Congratulations!! Welcome aboard!!
Love n hugs. Chrissy
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Great news, ChelleG!
Tina
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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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Big welcome hugs (and infinite exclamation marks, sorry keyboard is not working properly), Chelle.
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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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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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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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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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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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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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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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Great news for you Chelle! Unfortunately we all have different paths to tread with this disease.
Love n hugs. Chrissy
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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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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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Great news Screech!! Congratulations!!
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After 6 months of taxotere, herceptin and perjeta, I have been officially declared NED. I feel extremely blessed.
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Good news. Brava, ladies!
Tina
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Hooray kkrenz!!! May it last forever!!!
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Great news kkrentz!
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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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👏💐👏💐
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Caren, congratulations on the impending birth of another grand daughter! Such good news, and so it goes...
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Thank you! I'm very excited
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