Stage IV NED crew : let's support each other

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    Perfect song Boo. I can just see you dancing like crazy!

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  • screech
    screech Member Posts: 212
    edited October 2015

    yay Boo! Hopefully I'll be dancing along with you. saw my onc today and all seems well on the surface. I get my six month pet next Thursday and then the results not until November 9-I have to go out of town. Its going to be suspenseful for sure.

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited October 2015

    Great new Boo!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2015

    Had tumor markers done yesterday and waiting for those results along with waiting for a call to get a PTscan scheduled to double-check a random lymph node in the groin that lit up last time (my cancer spread by blood not lymph nodes so it would be really weird if it popped back up there) I will feel a little bit better that my NED status is remaining if the markers come back good on Monday/Tuesday.

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  • jobur
    jobur Member Posts: 726
    edited October 2015

    Hi NED gals!

    I have never visited this thread before, but came across this article while surfing and thought I would share it in case you have not seen it. More good news for you NED ladies! Hope to join you some day.

    http://www.cancernetwork.com/breast-cancer/mbc-patients-who-attain-no-evidence-disease-live-longer

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited October 2015

    Fingers crossed for good markers, NBNotes!

    Thanks for the link, Jobur!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited October 2015

    Hey Jobur, read the article that you shared. It definitely gives me hope with my NED status. THANKS for sharing!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2015

    Jobur -- That article is definitely a reason for women to fight for treatment of the primary tumor especially if their metastasis is only in one site as mine was. I have always been thankful that we didn't realize I was stage IV until after my mastectomy b/c they so often don't do mastectomies for stage IV's, but that article & the full research article at http://onlinelibrary.wiley.com/doi/10.1002/cncr.29681/full indicate that there is some benefit to treatment there. Sorry for my little tangent..... but this just really interested me.

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited October 2015

    That's great info, NBNotes. And Jobur, the article gives me hope.

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  • Boo123
    Boo123 Member Posts: 182
    edited October 2015

    Thanks Jobur, food for thought there...and NBNotes. positive thoughts coming your way...

    Boo


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  • jobur
    jobur Member Posts: 726
    edited October 2015

    nbnotes, I found that interesting as well. I have always been a little pissed that my mets were not discovered until after surgery despite having (at least in retrospect) pretty obvious symptoms. Makes me feel a little better to see some indication that treating the primary may be advantageous. I was also interested to read that presenting with de novo mets made reaching NED status more likely.

    KCM, Good!!


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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited October 2015

    Hi all,

    I have to tell this story somewhere... A woman I know who is very active in her church asked me if she could do something for me and I agreed to it. She and her friends have a quilting circle that is affiliated with the churches in the area. They made me a prayer quilt. Every one who ties a knot says a prayer for me. She wanted to know what I wanted, and I said, courage, strength, and remission. I received the quilt today and it's stunning. They had asked me what colours I liked, and they delivered. And it has many threads and knots. It's also been to the local parishes to be blessed by the vicars. I am beyond humbled and honoured that they would do something like this for me - most of them don't even know me but still donated their time and love for a quilt for me. Note that I practice Buddhism and am not a member of any of these churches. Yet, still they were happy to do this. Made me tear up a bit when they delivered it. :) So here's to remission! Pic of the quilt below. It's even prettier in person; more vibrant.

    image

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  • Boo123
    Boo123 Member Posts: 182
    edited October 2015

    Kiwi, that is a beautiful quilt and a beautiful storey. I am especially humbled to hear that so many people created this beautiful thing for someone who has their own life views and follows a different pathway. I am a humanist and an atheist with an understanding of Bhuddism, but I still see the love and support from those who do have a faith in a god, and this is a wonderful manifestation of such thinking, and much love. What a very special gift, I hope that it helps you and gives you strength and courage on your journey to remission. Love Boo.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    Kiwi, it's very humbling when complete strangers reach out in prayer and love to support you. The quilt is beautiful and brings tears to my eyes just thinking about those lovely women who did this for you. So many awful inhumane stories hit the news, I just wish there were more reports of mans humanity to man.

    Thank you for brightening my day.

    Amy

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    I am no longer enjoying NED status, But I hope to be soon, so I hope you don't mind an interloper here.

    Amy

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited October 2015

    Kiwicatmom. Such a beautiful quilt and powerful story!

    Amy...praying that you reach a NED status once again!

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  • annieoakley
    annieoakley Member Posts: 870
    edited October 2015

    Terre, what a beautiful story and beautiful hand made quilt. That is so special, your story is heartwarming to say the least, wow to the kindness of strangers. We already know you have courage and strength so prayers for remission to stay with you forever.

    Amy, prayers you'll be dancing with NED again very soon.

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  • Boo123
    Boo123 Member Posts: 182
    edited October 2015

    Amy, you are very welcome here. I truly hope all who would like to share their thoughts on this thread are welcome, whatever their status. No judgement, we are all in this together. Please continue to share your friendship with us. And Amy, I hope that you reach NED again very soon. let us know how you are getting on in your journey. Love Boo.

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  • teacher911
    teacher911 Member Posts: 853
    edited October 2015

    Boo, I am so happy for you !

    Terre, that is such a beautiful quilt, and so wonderful that these women wanted to do something special for you.

    Amy, hoping you and NED are back together very soon.


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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited October 2015

    Just got scanned. NED, baby!! 5 years and counting!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited October 2015

    Congrats Linda!!! That is awesome news!

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  • Boo123
    Boo123 Member Posts: 182
    edited October 2015

    Yeay Cafe! That's the kind of news that I always want to hear! Well done and hope things always stay that way for you! Boo :-)


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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    Yay Linda - I wish you 5 + more years of NED.

    Amy

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited October 2015

    Thanks for your nice comments. I wasn't sure if I should post or not, but felt the need to share since it was just so mind-blowing.

    LindaJ - WHOO HOOOOOOO!!!!!!!!!!!! Doing the happy dance with you.

    Amy, I don't see you as an interloper and am glad you're here. We'll be doing the happy dance for you soon, I'm sure of it.

    Hugs to all,

    Terre

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2015

    cafelvr,

    If I could do cartwheels I would! Congratulations and wishing you many, many more good years.

    Caryn

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2015

    Tumor markers are still good; guess I'm staying on this board at least until my next PTscan.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2015

    Good news Nancy. Thanks for sharing.

    Amy

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  • Boo123
    Boo123 Member Posts: 182
    edited October 2015

    Yeay Nancy, so pleased for your stable tumour markers and fingers crossed for a good scan - and you will always be welcome on this board! Love Boo xx


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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited October 2015

    Hooray Nancy!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited October 2015

    Awesome news Nancy!

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