Stage IV NED crew : lets support each other
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Perfect song Boo. I can just see you dancing like crazy!
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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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Great new Boo!
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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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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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Fingers crossed for good markers, NBNotes!
Thanks for the link, Jobur!
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Hey Jobur, read the article that you shared. It definitely gives me hope with my NED status. THANKS for sharing!
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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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That's great info, NBNotes. And Jobur, the article gives me hope.
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Thanks Jobur, food for thought there...and NBNotes. positive thoughts coming your way...
Boo
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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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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.
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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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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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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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Kiwicatmom. Such a beautiful quilt and powerful story!
Amy...praying that you reach a NED status once again!
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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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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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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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Just got scanned. NED, baby!! 5 years and counting!
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Congrats Linda!!! That is awesome news!
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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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Yay Linda - I wish you 5 + more years of NED.
Amy
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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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cafelvr,
If I could do cartwheels I would! Congratulations and wishing you many, many more good years.
Caryn
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Tumor markers are still good; guess I'm staying on this board at least until my next PTscan.
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Good news Nancy. Thanks for sharing.
Amy
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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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Hooray Nancy!
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Awesome news Nancy!
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