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-   -   All those dancing with NED (https://her2support.org/vbulletin/showthread.php?t=34518)

RobinP 07-02-2008 01:38 PM

6 Years Out And Hoping Myself And Others Will Forget That I Ever Had The Big C. But That's A Hard Name To Get Rid Of.

MJo 07-02-2008 01:50 PM

MERENGUE! Diagnosed in November 2005. That's 31 month (more or less). God willing, I will stay NED.

sassy 07-02-2008 06:55 PM

I wrote a really long post the other day--then lost it. So I guess the best thing I can share is that I am NED for 3 years and 4 months, and have every reason to believe I will stay that way. If I don't, there are many, many avenues of treatment and more being developed all the time.

karen raines hunt 07-02-2008 08:09 PM

Ned
 
Hi,
I don't post very often, but had to respond to this post. As you can see from my signature, I had a huge tumor, but I am 3 years and almost 3 months out from my diagnosis and still NED!
Karen

Vi Schorpp 07-03-2008 09:11 AM

5 Years and 3 months out
 
and doing well...

TerriC 07-03-2008 02:30 PM

14 months
 
It's been one year and two months since my diagnosis and every day is a gift.

weezie1053 07-03-2008 09:04 PM

Diagnosed in June 2006. Will be NED 2 years in September. Scheduled for an MRI in August, and I will breathe a big sigh of relief to past the 2-year mark NED.

jones7676 07-03-2008 10:45 PM

Great idea! Love to hear those positive stories.....

newgg 07-07-2008 12:10 PM

Ned
 
NED for 4 years ! Whoooopeeeeeee !!! ( actually 4 years and 1 month but who is counting ) What a wonderful thread to find. this is so needed right now. Mostly lurk but had to respond to this. Also feel that this is my info home and celebrate each day as a "present" !! Hope we keep bumping this up for the newbies.
Bonnie

Unregistered 07-07-2008 03:32 PM

Hi everyone, it's Audrey here, checking up on my Her2 sisters using the library computer (we don't have our home computer working at the moment)--just wanted to chime in with my good news--diagnosed in July 2001 (huge tumor, many lymph nodes positive)--celebrating 7 years NED! I feel so lucky to have participated in the Her2 clinical trials back then and to still be here today and looking forward to many more tomorrows... Keep hope alive, there are lots of survivors out there these days!

Chelee 07-07-2008 05:40 PM

Audrey, I knew it was just a matter of time and you would check in long enough to add your NED status. :) It's so appreciated. No doubt MichelleU is off enjoying her summer as is most...but I'm sure she will eventually check in here soon enough too. Because we can't forget her...she is 5 or 6 years out too. :) Wooo hooo to both of you.

Thanks again to Donna for starting this thread. Maybe we can get a few of the lurkers to join in here. I'm sure there are many more we haven't heard from. The more the merrier as they say.

Chelee

Catherine 07-07-2008 10:01 PM

NED for 2 years and 3 months. Just had my second follow up after the end of my 1 year Herceptin. I feel very good and I even think my stamina is returning. This is a very hopeful post that I would have been happy to read when I was first DX.

If a recurrence shows up, I plan to fight it off just like the other warrior women and good souls on our Her2 site. (easy to talk big now that I feel good :)

My oncologist will see me every 4 months. He relies on my report to him, a hands-on exam and tumor markers. I am happy to report that my tumor marker was a 7. (I think he considers anything under 40 to be normal and markers can also give false readings.) I will get a pet scan or similar if I complain of aches and pains and anything new that does not feel right.

Hugs to all, Catherine

schoolteacher 07-08-2008 11:47 AM

Thank all you ladies for the encouraging information and God Bless You all.

Amelia

SusanV 07-09-2008 09:30 AM

Hello Everyone,

Just wanted to add, that I am fast approaching my 2 year celebration (August) Life is spectacular ! And in keeping with the long term NED thoughts. My grandmother was dx in her thirties and lived to be 87....May we all live fullfilling, happy lives. Live Love Laugh. It is never how much time we have, it is how we spend it that matters.

LOVE to all of my Her 2+ Sisters

DanaRT 07-09-2008 06:41 PM

I suppose I could say I am 8 months NED. With no node involvement, it would mean I was NED just post surgery?

I am encouraged by all the positive news.

Thank you,

Dana

Marily 07-12-2008 06:53 PM

(Hi for some reason I cannot turn off the bold on this sorry...) I have been NED for almost 8 years my anniversary will be coming up soon. I was stage IV after finding a tiny lump two months prior.. Her2neu +++ est+++ prog+++ If not for Dr Slamon and Herceptin things would have turned out much differently. I am really looking forward to seeing the upcoming movie being made. I loved the book on the birth of Herceptin.
Marily

Marily 07-12-2008 06:58 PM

Audry, or anyone who knows how to reach her I would love to chat with you on your Herceptin journey... I have been searching for someone who was in the trials... Hugs and live life with love and laughter
Marily

Marily 07-14-2008 12:49 PM

Dancing with Ned almost 8 years POEM
 




A DARKER shade of PINK

I see the ribbon
s pinkness and I ache to paint it black
No cure for those of us with METS, so take that ribbon back.
I watch the crowd race by me, all dressed in running clothes
I have to turn my head away until my sadness goes.

For some of us a darker, deeper shade of pink prevails
Doesnt anybody know thatbreast metastases still ails?
Our fight continues, day by day, and some times year by year
For many that dark shadeof pink just will not disappear.

So many friends have walked this road, so many left behind
They fought so hard to stay with us, but cancer was unkind.
We have their names engraved inside, their sadness and their tears
Lost sisters with a strength and grit, who fought through endless fears.

We feel the many side effects of hopeful treatment choices
Neuropathies, bone loss and cramps, lost vigor in our voices.
We look back at the years of treatments -- theyll go on and on
But dancing with a guy named NED is our triumphant song!

So when I see that ribbon pink, and then my own of wine
I must stand proud and wear that ribbon for lost friends of mine.
Were sure to face more future trials -- results unknown, thats true
Were also making waves which may one day help some of you.

So please remember pink is worn to celebrate stage one
Stage four survivors share a shade of pink -- a darker one.
We pray that someday soon theyll find a cure for this disease
And ribbons wont be needed when weve brought cancer to its knees.
Marilyn E Daves

I am a reader here mostly lately.. and there always is so much that I learn from all of you..
I wrote this after my "support Group the YaYa's " all passed away after going along for over 6 years and left me the last standing frontiersman.

thank you all for giving so much on this list It brings not only information but so much support!
Marily

DanaRT 07-14-2008 01:09 PM

Marily,

I am touched by your poem.
It's powerful and beautiful.

Dana

Mary Jo 07-14-2008 02:37 PM

Hi Marily,

Thanks for sharing that thought provoking poem. It made me sad as I remember there are so many who struggle and suffer with stage 4 breast cancer. I truly am so sorry about that and like everyone else, wish it weren't so.

Congrats on your 8 years being NED. How wonderful for you.

Oh they "whys" of this disease. That's what always throws me. Why some treatment isn't effective for - why some it is - why some succumb to the disease and others don't. There is no rhyme or reason to this dreadful disease.

Again, thanks for the poem. May everyone who reads it offer up a prayer for those who struggle daily with this disease.

Love & Peace,

Mary Jo


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