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Old 06-07-2014, 06:27 PM   #21
Ruth2
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Re: How many years NED? Give others hope

Thank you for making me feel more hopeful. I usually am, pretty much, but this thread helped.
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surviving stage 2b diagnosed at annual mammogram 2010, mastectomy, TCH, radiation, Herceptin, follow-up tests clear as of 2012, age 56, college teacher, outdoorsy and active, health conscious
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Old 06-10-2014, 10:38 PM   #22
margaret
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Re: How many years NED? Give others hope

I wanted to add my positive story.
13 years NED !!!!
I feel great! Take no medicines. Grateful for every breath

I had stage 3b, 9cm, er/pr - and her2+++ ,16 pos. nodes in Nov. 2001 at age 38. My daughters were 8 and 10.
Mastectomy, 4 ac, 4 taxol plus herceptin and 1yr herceptin and radiation.
No reconstruction.

Blessings and prayers to all those going through treatment and still battling the disease. There is hope!!
Every new breath brings potential joy.
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Old 06-17-2014, 01:59 PM   #23
rondo
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Re: How many years NED? Give others hope

6 years. I intend to live forever. So far, so good!,:-)
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IDC 6 mm l.b. 3/08 age 49; ER <1%+; PR -; KI67 40%; HER2 +++by FISH; lumpectomy/snb 4/08; extensive dcis found at surgery (didn't show in bx or mammo); micromet in sn; MRI breasts and chest 4/08-NED; re-excision l.b. 5/08; refused axillary node dissection; no ca found in re-excision tissue. TCH q 3 wk x 6 finished 10/08; whole breast rad x 7 wk finished 12/08; refused axillary and supraclavicular rad. Herceptin thru 6/09. Refused tamoxifen & aromatase inhibitors.
1/13 so far so good:-) have vestibular hypofunction from chemo but its all good since now officially on borrowed time!
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Old 06-17-2014, 07:54 PM   #24
JillaryJill
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Re: How many years NED? Give others hope

3 years and 7 months, my first grandchild is due October 30. She is a girl and my son and his wife already named her Everly "Ev". We can't wait!!! I never thought I would see this day!!! Feeling blessed everyday!
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 06-18-2014, 02:14 PM   #25
lkc Gumby
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Re: How many years NED? Give others hope

9 years for me!
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 06-24-2014, 05:32 PM   #26
cafe1084
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Re: How many years NED? Give others hope

I was diagnosed ER/PR-, HER2+ in August 2006, bilateral mastectomy with 3months adriamycin, 3 months taxol, and 18 months herceptin...so its been almost eight years. The only problems I have are some nerve damage to my left hand and to a few toes from the chemo. I feel I may have a potential heart issue from the adriamycin, but so far all is well. I havent been here for a few years, but I feel so blessd to have found this site and the people who created it...it got me through many dark days.
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Old 08-10-2016, 08:55 PM   #27
ljbm
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Re: How many years NED? Give others hope

Nine years since diagnosis and still cancer free! Thank God and MD Anderson.
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5/07-clean mamo
8/07-found lump in right breast
9/07-diagnosed HER2+++, IDC, ER-PR-, 6.2 cm tumor, stage 3, 1/18 nodes, grade 3, modified radical mastectomy
10/07-power port installed, chemo begins
12/07-finished 4 rounds AC
1/08 began taxol/herceptin
3/08-finished taxol, herceptin only till end of 08
4/08 30 rads
12/08-last chemo I pray
1/09-port out, YEA!!!
Currently NED and pray I stay that way.
Thank God and MD Anderson!!!
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Old 08-11-2016, 03:57 PM   #28
lkc Gumby
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Re: How many years NED? Give others hope

Now over 11 years and thankful everyday!
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 08-23-2017, 05:29 PM   #29
Cathya
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Re: How many years NED? Give others hope

NED since treatment in early 2005 so 12 years. Diagnosed stage 3C. I am so happy. Now to beat ovarian cancer lol. I miss this site since I'm now focused on the ovarian.......there is NO site like it!!!

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Nice! My hair came back really curly. Hope it lasts lol.

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Old 08-23-2017, 05:56 PM   #30
ljbm
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Re: How many years NED? Give others hope

10 years and counting. I am blessed.
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5/07-clean mamo
8/07-found lump in right breast
9/07-diagnosed HER2+++, IDC, ER-PR-, 6.2 cm tumor, stage 3, 1/18 nodes, grade 3, modified radical mastectomy
10/07-power port installed, chemo begins
12/07-finished 4 rounds AC
1/08 began taxol/herceptin
3/08-finished taxol, herceptin only till end of 08
4/08 30 rads
12/08-last chemo I pray
1/09-port out, YEA!!!
Currently NED and pray I stay that way.
Thank God and MD Anderson!!!
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Old 08-23-2017, 06:09 PM   #31
melruth
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Re: How many years NED? Give others hope

Wow! Great to see ljbm!! Thanks for posting xx
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Old 08-24-2017, 06:56 PM   #32
Becky
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Re: How many years NED? Give others hope

I am almost 13 years now
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-28-2017, 10:07 PM   #33
StephN
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Wink Re: How many years NED? Give others hope

Nice to see this thread revived.

I am now close to 15 years stage IV. I surprise myself when I see that number!!! I am going to my high school 50-year reunion in about 3 weeks!

NED I would have to say 12 years at this point.

Hope to hear from some others.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and half of 2017. Boring ...
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Old 08-29-2017, 06:17 PM   #34
Melissa
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Re: How many years NED? Give others hope

Diagnosed first 3b then 3C 11.4 years ago. My girls were 4,6
And 8 and now a junior in college, a senior
In high school and One a sophomore!
Lots of hope now and for the future!
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2016 - 10 years!
04/2017 - 11 years!
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Old 08-29-2017, 07:16 PM   #35
Kkmom
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Re: How many years NED? Give others hope

Triple Positive - TCH - 4 Years and 8 months - NED!!!
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Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!


4 Years - NED December, 2016!!!
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Old 09-06-2017, 09:54 AM   #36
Laurel
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Re: How many years NED? Give others hope

It is 9 years for me. Triple positive, Stage 1b, ACTH. Still here and thankful!
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
9 Years NED
I think I just might hang around awhile....

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Old 09-13-2017, 09:25 AM   #37
pscheer
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Re: How many years NED? Give others hope

I am still Ned
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Old 09-14-2017, 06:44 PM   #38
DianaMK
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Re: How many years NED? Give others hope

So much good news!!! 7 years-stage 4 here!! My nurse reminded me this week I was receiving my 124th Herceptin treatment...Feeling blessed and may God bless each and everyone of you...
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12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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