All those dancing with NED

[DonnaD]

Just wanted to bump this to the top and say thank you to all who have responded.

You have helped me and so many others regain that deep down good feeling. Lets keep the posts coming!

Thanks again!
Donna

[SusanV]

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

[Marily]

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
Doesn’t 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 -- they’ll 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.
We’re sure to face more future trials -- results unknown, that’s true
We’re 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 they’ll find a cure for this disease
And ribbons won’t be needed when we’ve 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

[MCS]

two years here. I miss every sister we have lost as a friend.

i am so glad there are so many familiar faces on this thread with such smiles.

my love to all of you

maria

[jules9600]

Will be 3 years for me also in Nov. Yeah!

[basset girl]

Great thread to start! 2 years, 3 months NED. I remember when I was first diagnosed I searched frantically for anyone that was NED after a diagnosis like mine. It helped so much to encourage me. I hope this thread will help many others!! May God's peace and comfort be with all of us.

[Ruth]

I love sharing happy news...

this month was my 5 year NED!

I had 10 positive lymphnodes with many of them matted together....

There is lots of hope out there!

Hugs ~ Ruth

[nitewind]

I was diagnosed two years ago this past May, it will be two years since my surgery this July. Everything is going great! No problems. Praise God!

[Kim in DC]

It's hard to believe that I have been back and forth with breast cancer for 10 years, but here I am. I feel great! Tykerb and Xeloda have brought me back to the land of NED!!!! Read my bc bio below

Kim

[Lien]

Great idea! I'm four and a half years, yes that's 4,5 years, out from diagnosis. I didn't get Herceptin, because it wasn't available then for early stage disease, and I'm doing fine. Dancing with NED!

I just read on a Dutch site that in my country 85% of those diagnosed with Breastcancer survive at least 5 years. For early stage the odds are even better. When I was diagnosed the number on the same site was 80% survival. In just 4 years the stats have improved that much!

Love

Jacqueline

[romo9]

18 positive nodes - now 3.8 years NED . Great to be here ! Romo9

[Patb]

Two year anniversary this month. Every day is a gift
and life has never been sweeter. My bones ache from
Arimidex but I just keep moving. This site has been
a wonderful, informative, happy, and yes sometime
sad place but everyones support has been a lifeline.
With gratitude
patb

[AlaskaAngel]

ER+, PR+, HER2+++ T1c (1.6 cm)
CAF x 6, rads, 1 3/4 yr tamoxifen
No Herceptin, no lapatinib

Hoping that natural sunshine whenever possible (or supplement), daily exercise, organic foods, attention to balancing omega-3's and 6's including use of ground flaxseed, only sweetener used is Stevia will help to keep me NED...

AlaskaAngel

P.S. Have added red grapes, and white button mushrooms....

Hi everyone…Yes I will finally hear the song
“No more chemo … chemo for you
Here’s a salute for all you’ve been through.
And now we bid you adieu…
no more chemo, chemo for you…!!!
I have waited 8 years to have that sung to me and it keeps going on and on in my brain since last night on the plane home…Boy they had better sing it to me lol after all the times I have sung with them for others!!!
I will try to explain why I am coming off my cancer meds. My doctor said I could stop both Herceptin and Aromasin they feel that even if I am very estrogen and progesterone Positive ( I was +++ for both,) with my response to my chemo Adriamycin/Cytoxin, Taxol, and Herceptin, and especially since the large liver metz did not come back ... I am not needing either... He said something to the effect that in trials they have been doing the past two years, they see no evidence that the two needed to be used in conjunction with each other, For me…. the targeted drug, Herceptin and chemo drugs did what was necessary. So the Aromasin is being stopped, My Herceptin is stopped, since I have remained NED this long.
I hope he puts it better in the letter he sends, and I will try to get it in here as soon as I receive it.
I have been NED since the chemo meds. I have had a very good response to them... and the time I have been on Herceptin (almost 8 years,) I have been building up antibodies to the Herceptin and have had some major responses to it ...
Two years ago I saw him ... at that time it was not certain to stop, there was no definitive testing or trials to go on, I could either stop or go on, start Tykerb ?… they were willing to put me on just the Tykerb? but could not tell me what to choose? Since they had no good answers, I decided to continue on Herceptin... this being given (with his suggestion), one dose every two weeks instead of once a week, this was double diluted and run for 2 1/2 hours with IV Benedryl and two extra strength tylenol… since I got an immediate Headache.
I did ok on this, but about a month and 1/2 ago I had a very bad response again and stopped for a 6-week rest and made an apt to see him again. I have had reactions of severe CHF...about 4 years into the drug.. And my ejection fraction went to 21. I am now on lots of cardiac meds. I am up to 70 ejection fraction but am still taking all the cardiac meds, my bp remains elevated.
I have also, since starting the Aromasin, had a fast and large fall in bone density.
After switching fromTamoxifen to Aromasin...In matter of two years I went from a young woman’s bones to my age last year ( I am now 60 lol) and have a bone density scheduled next week to see where we are now.
Last year I had neck surgery, replacing 3 of 5 bones in my spine at cervical 4 5 6( others were very bad, but for the ability to move we could only replace these.) Two grew bone and one cage is empty. Now I, have to go back and get that fixed.
I have lots of pain in legs and lower back and aches in joints. I walk like and old lady if I do not take my pain meds (Ketoprofen) twice a day (which has my pcp going in circles) She is worried about kidney failure. My arms and hands zing hot fiery nerves like lightening bolts, and I get severe numbness from the shoulder through hands especially on left side. Therefore I cannot sleep, I cannot turn my head side-to-side or forward to back because things get worse. I drop things have very bad sense of balance and fall, easily, or trip. With my bones loosing calcium, that is just asking for trouble.
Plus all the other “little things” like runny nose, tearing eyes, crusty bloody nose, mouth sores, bad nails and hair, GERD. Flu like symptoms and severe cramps all over, (Especially the first week after Herceptin), oh and I also crash a couple days, cannot move and do anything even if the world were coming to an end lol…this last time it took me three weeks to be able to get out of bed and be me again.. etc etc etc.
Up until now I have been very happy to have any side effects just to continue to be alive and with my family…but now I have a choice.
So , I am definitely planning that getting off these meds will definitely change some of my symptoms (at least the every two week response to the Herceptin). And that I may eventually grow better bones so my next spine surgery will work, also that my spine will quit disintegrating
and many meds will go away. I hate that big handful every morning and evening…
I was told to take vitamin D, calcium and get out in the sun 15 min a day instead of starting on the big calcium replacement drugs.
Vitamins will be all my med intake in a time in the near future! I eat lots of highly endowed with antioxidants, colored fruits, and vegetables (mushrooms of all kinds included)
I hope this helps to answer your questions. I will definitely try to explain better why off both meds at the same time when I get the letter... sorry chemo brain in use here…. uggg

Hugs and love

Marily : ) definitely dancing with NED.

[harrie]

I am 1.5 yrs NED!
Donna, this is a great idea for a thread that you started here!
Thank you!

3 years. Woo hoo! I guess you never know but I'm beginning to feel like I'm done with it. Hoping it was a fluke convergence of hormones and genetic defects. Bev

[caya]

I was dx in Oct. 06, by accident - I had a breast reduction and my PS found my 1.7 cm. tumour. This was 3 months after a mammogram and breast u/s showing nothing. I was devastated - no BC in my family, and my DH had just suffered a brain aneurysm in Jan. 2006. (he's fine, we were very, very lucky).
Needless to say, when I started reading and investigating about Her2+, alot of the news out there was not exactly + (excuse the pun). But in Dec. 2006 I believe the Hera trials and others came out with the wonderful news about Herceptin - in Canada Herceptin was already available to early stagers, and my onc. was much more positive.
In Jan. 2007 studies were published relating that pre-menopausal, dense breasted women were 6x more likely to get BC. (I fell into both those categories). This has been my mantra - I tell everyone I meet to get checked, and to demand breast MRIs if there is any question of breast density on their mammos and u/s.
Well, I guess I am 18 months out from my MRM, looking forward to that 2 year cancerversary in Dec. 2008.

Living each day to the fullest - The Dh and I celebrated out 25th wedding anniversary in Oct. 2007 with a big catered party at home, my youngest daughter graduated high school in June 2007, and this month, June 2008, my older DD graduated university. I savour every day, and try not to put things on hold anymore.

all the best
caya

[lkc Gumby]

I celebrated 3 yrs in May 08!
God is good.

[Paty]

I celebrate my two-year anniversary tomorrow and plan to keep counting! God bless us all!

[Mary Anne in TX]

Congrats Paty on 2 years tomorrow!
Two years and two months ago I had surgery with largest tumor 4.5 and 7 of 9 nodes positive. But here today NED and loving life more than ever. Thanks for the knowledge, support, and love on this site for making the journey so much easier! ma