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07-02-2008, 01:38 PM
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#41
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Senior Member
Join Date: Nov 2005
Posts: 943
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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.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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07-02-2008, 01:50 PM
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#42
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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MERENGUE! Diagnosed in November 2005. That's 31 month (more or less). God willing, I will stay NED.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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07-02-2008, 06:55 PM
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#43
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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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.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
Last edited by sassy; 07-03-2008 at 05:55 PM..
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07-02-2008, 08:09 PM
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#44
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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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
__________________
Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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07-03-2008, 09:11 AM
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#45
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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5 Years and 3 months out
and doing well...
__________________
Diagnosed 4/03/03, age 50
3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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07-03-2008, 02:30 PM
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#46
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Senior Member
Join Date: May 2008
Posts: 28
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14 months
It's been one year and two months since my diagnosis and every day is a gift.
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07-03-2008, 09:04 PM
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#47
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Senior Member
Join Date: Nov 2006
Location: Bedford, Virginia
Posts: 134
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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.
__________________
- Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
- Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
- AC/Cytoxin combo - 4 treatments (dose dense);
- Taxol/Herceptin combo- 12 weekly treatments;
- Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
- BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
- MRI, 08/02/07 - NED
- 1 year Anniversary - 09/07; completed Herceptin 11/07.
- Mammo 02/14/08 - NED; MRI - 08/2008 - NED
- 2 year Anniversary - 09/08
- Mammo 02/09 - NED; MRI - 08/09 - NED
- 3rd year Anniversary - 09/09
- 5th Annivery - 09/2011 - NED
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07-03-2008, 10:45 PM
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#48
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Great idea! Love to hear those positive stories.....
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07-07-2008, 12:10 PM
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#49
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Senior Member
Join Date: Dec 2005
Location: virginia
Posts: 99
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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
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07-07-2008, 03:32 PM
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#50
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Guest
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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!
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07-07-2008, 05:40 PM
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#51
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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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
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-07-2008, 10:01 PM
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#52
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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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
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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07-08-2008, 11:47 AM
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#53
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Thank all you ladies for the encouraging information and God Bless You all.
Amelia
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07-09-2008, 09:30 AM
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#54
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Senior Member
Join Date: Aug 2006
Location: PA
Posts: 188
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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
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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07-09-2008, 06:41 PM
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#55
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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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
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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07-12-2008, 06:53 PM
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#56
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Senior Member
Join Date: Mar 2006
Location: Aurora CO
Posts: 75
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(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
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07-12-2008, 06:58 PM
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#57
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Senior Member
Join Date: Mar 2006
Location: Aurora CO
Posts: 75
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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
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07-14-2008, 12:49 PM
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#58
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Senior Member
Join Date: Mar 2006
Location: Aurora CO
Posts: 75
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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
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
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07-14-2008, 01:09 PM
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#59
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Marily,
I am touched by your poem.
It's powerful and beautiful.
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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07-14-2008, 02:37 PM
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#60
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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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
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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