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02-17-2012, 10:02 PM
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#1
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Senior Member
Join Date: Nov 2009
Posts: 72
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3 Years NED
Hi All,
I just couldn't let this day slip away without giving thanks for my 3 year NED status. My initial surgery was on February 17, 2009, and removed two very small but aggressive tumors, and 10 cancerous lymph nodes. Scans following (as recent as two months ago) and my double mastectomy showed no further evidence of cancer -- therefore from the time of the surgery I have been NED. So thank God, and to all of you -- thanks for all of the support. Hopefully, I am in the position to offer support, and hope to others!
__________________
Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastasis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy 11/09
Radiation 12/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
DEIP Flap 4/17)
8 Years NED 2/17
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02-18-2012, 01:34 AM
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#2
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: 3 Years NED
That's fantastic news Estelle, thanks for sharing with us. I hope you dance with NED forever!
Dawn
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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02-18-2012, 11:10 AM
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#3
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: 3 Years NED
Estelle,
Congratulations on your third yr. NED.
It is such a wonderful and joyous feeling. Wishing
you 3 x 3 x 3 x 3 x 3 more of them (you get the idea)
Hugs,
jean
PS Love the photo you look beautiful!
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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02-18-2012, 01:08 PM
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#4
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: 3 Years NED
Keep going, Estelle! Don't look back!
Karen
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02-18-2012, 04:36 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: 3 Years NED
Big congrats Estelle!! 3 years out is a big milestone, especially for Her2+.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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02-18-2012, 05:31 PM
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#6
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Senior Member
Join Date: Aug 2011
Posts: 85
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Re: 3 Years NED
Great news, Estelle! Congratulations on your reaching another NED milestone!
Here's to many many many more!
And, you are already there for us, inspiring and helping. I look forward to posting someday my first NED anniversary, and report that I entered a trial, thanks in part to your mentoring.
warm hugs,
Mary
__________________
dx 7/2011
open incisional biopsy w/o clear margins
IDC IIa Her2+++ ER-PR- Ki-67 72%
changed doctors
9/2011 Rt breast mast w/expander
Sentinel node neg
scans clear
10/2011 port in
10/2011 began TCH
2/2012 last TC. Herceptin through 10/2012
severe osteopenia
7/2012 prophylatic left mast, node clear
11/2012 anemic
12/2012 began MDAnderson clinical trial
1/2013 implants in, port out!
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02-19-2012, 12:12 PM
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#7
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Senior Member
Join Date: Jun 2007
Posts: 216
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Re: 3 Years NED
Many congratulations Estelle on three years ned.
Hope you are ned forever.
Best Wishes
Janie
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02-19-2012, 01:46 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 3 Years NED
Many congrats Estelle!!!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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02-20-2012, 12:30 AM
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#9
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: 3 Years NED
How wonderful for you Estelle!!!!!!!!!!
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02-20-2012, 01:50 AM
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#10
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: 3 Years NED
Im so happy for you, Estelle. Enjoy every minute of every day....Here's to many more years of NED!
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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02-20-2012, 05:15 AM
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#11
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Senior Member
Join Date: Jan 2011
Posts: 40
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Re: 3 Years NED
That's wonderful news! Congratulations, and way to beat this crap three years running!
__________________
Krissi
12/27/10 - IDC, rt breast (approx. 15 cm), lymph nodes, age 36. 1/7/11 - stage 4 IDC, extensive liver mets, Bone mets (spine, sacrum, rib, sternum, upper arm), ER-/PR-, HER2+++; 1/12/11 - port, 1/17/11- startweekly Taxol/Herceptin, monthly Zometa
3/8/11- decrease in all tumors, bones healing. 3/11- 3 wks on/1 off Taxol/Herceptin, +Zometa
6/6/11 - decrease in all tumors, healing bones, 2-4 new liver lesions. 3 wks on/1 wk off Taxol/Carbo/Herceptin, +Zometa
7/29/11 - liver progression, others stable; 8/11-drop taxol/carbo, start Navelbine
12/11 - liver progression; begin AC, drop Herceptin;
1/12 - liver enzymes normal, 2/6 results show regression in liver, stable others, but 9 tiny brain mets (largest 7 mm). Begin 13 WBRs 2/6; 2/29-start Tykerb, 3/7, start Xeloda
5/2012- liver progression and regression, liver biopsy confirms HER2+++. drop Xeloda, start Herceptin, Tykerb, Zometa.
5/2012- brain MRI shows all lesions gone except 1, 2mm shrinking!
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02-20-2012, 09:46 AM
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#12
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: 3 Years NED
Congratulations from another stage IIIC er! So wonderful to read! Celebrate.
__________________
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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02-20-2012, 02:55 PM
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#13
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: 3 Years NED
Congratulations!
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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02-21-2012, 03:20 PM
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#14
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: 3 Years NED
Estelle,
Congratulations on 3 years cancer free!!! May you be NED forever!!!
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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02-22-2012, 01:28 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: 3 Years NED
Yea Estelle! Many more years to come!
__________________
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.......
14 YEARS NED!
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