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Old 05-21-2017, 07:17 AM   #1
karen z
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12 years, but who is counting?

I just wanted to post (and hope this post will help some folks) that I have been NED for twelve years, as of May 10th, 2017.

I have gone from 53 to 65, just attended my beautiful and kind daughter's college graduation (older mom here), retired from being a university professor for decades (retirement effective Dec. 1, 2016) and hoping to close on my house in June (keep your fingers crossed) so that I can downsize and move into a beautiful apartment (with NO yard maintenance- I do have arthritis so yard work is tough but a patio garden would be great).

My daughter is taking a gap year or two (if a legal job requires it) and then applying to law school. She would like her dad and I to move closer to her when she gets a bit settled and renting will allow me to make further moves when the time is right.

Take care everyone. Karen Z
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Old 05-21-2017, 09:39 AM   #2
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Re: 12 years, but who is counting?

Congratulations, Karen and glad to hear from you!
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 05-21-2017, 10:47 AM   #3
tricia keegan
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Re: 12 years, but who is counting?

Karen that's wonderful, it's twelve years for me in July all going well. Many congrats and I hope all your plans turn out exactly as you want them to.
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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Old 05-22-2017, 12:48 AM   #4
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Re: 12 years, but who is counting?

Congratulations Karen - I don't think we ever stop counting.
Best wishes.... Pam
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Old 05-22-2017, 01:04 PM   #5
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Re: 12 years, but who is counting?

Big congrats Karen!

all the best
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
12 Years NED!!
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Old 05-22-2017, 01:42 PM   #6
Donna H
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Re: 12 years, but who is counting?

Wow! 12 years is great to hear!!! Congrats.
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Old 05-22-2017, 10:00 PM   #7
karen z
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Re: 12 years, but who is counting?

Thanks for your kind words JayKay ! I appreciate them very much.
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Old 05-22-2017, 10:03 PM   #8
karen z
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Re: 12 years, but who is counting?

Hi Tricia and congratulations as well. I think if I can get through the due diligence process on the potential sale (OMG), retirement will be great. Best to you !
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Old 05-22-2017, 10:04 PM   #9
karen z
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Re: 12 years, but who is counting?

You are right. I have my annual mammogram on Wednesday and I have been thinking about it a lot. It is always "there" but, perhaps, smaller and further back (but, there).
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Old 05-22-2017, 10:08 PM   #10
karen z
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Re: 12 years, but who is counting?

Many thanks Caya !!! Very kind of you.
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Old 05-22-2017, 10:09 PM   #11
karen z
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Re: 12 years, but who is counting?

Thanks Donna. I hope it is good to hear. We have so many folks on here that have been NED a long, long time (more than me). Keep moving forward.
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Old 05-23-2017, 05:25 AM   #12
lkc Gumby
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Re: 12 years, but who is counting?

Congratulations Karen. So very happy for you.

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
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
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Old 05-23-2017, 07:57 PM   #13
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Re: 12 years, but who is counting?


I am so happy for you and for your daughter. It's wonderful that you and your husband get to be closer to her.
Enjoy those retirement years!

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
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

04/2018 - 12 years!
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Old 05-24-2017, 10:10 AM   #14
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Re: 12 years, but who is counting?

I'm counting and 12 years is fantastic!! I'm 5 years behind you and feeling like my cancer battle is just a memory now. Hope you continue counting the years, we have reason to celebrate!
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 07-06-2017, 07:07 AM   #15
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Re: 12 years, but who is counting?

Fantastic! Congrats!
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Old 07-06-2017, 11:42 AM   #16
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Re: 12 years, but who is counting?

Karen, so pleased for you.

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Old 07-06-2017, 10:33 PM   #17
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Wink Re: 12 years, but who is counting?

Good news, and we never do stop counting!
I have been somewhat "otherwise occupied" myself so missed your post. Very glad to hear that things have moved along basically well for you and Bella. I can recall when you were taking her to interview colleges!

Be in touch off the board. Think of you from time to time, hoping things are on the good path for you.
"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.

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 all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-11-2017, 02:14 PM   #18
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Posts: 420
Re: 12 years, but who is counting?

Love to hear this news. It always gives hope to others just starting out and even for those of us that are years out
11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
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Old 10-14-2017, 07:20 PM   #19
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Re: 12 years, but who is counting?

Karen, I've been AWOL for a while but some head to have you join the 12 year club. Glad things are going well fir you. Congrats on the retirement and the graduation.
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
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
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Old 10-21-2017, 05:06 AM   #20
karen z
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Re: 12 years, but who is counting?

I have been off the board for awhile but many thanks to those who have written in response to my last post- I appreciate it (hi Steph and Sassy- pls send along your emails-mine is still the same). I went a bit crazy with purging work files after retirement and accidentally deleted two computer storage "cabinets" with family/friends emails. Steph, I remember all of those college visits very well too. Oh boy, what a time. I can not believe that Bella has graduated, that I actually retired, sold my house, found a beautiful temporary apartment, relocated 20 miles further outside of ATL and (although taking everything day by day) am doing well. I just started an art class and hoping to take more if I survive this one (I started off as an art major, lacked self-confidence, and immediately switched majors back in the day when I felt "I can not do this" and be good. Although discovery psychology was a huge blessing and I had a great career in psych., I have always wondered if I could do "this" and (from time to time) have taken classes in photography and pottery. I am now down to the kind of basic drawing class, which "did me in" and made me feel I could never handle art, but so glad I am trying it again. Anyway, guys, write me when you have a chance and catch me up on your lives. K

Last edited by karen z; 10-21-2017 at 05:08 AM.. Reason: typo
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