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Old 03-16-2019, 07:29 AM   #1
Kim in DC
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Join Date: Nov 2004
Posts: 190
Will be 8yrs NED from Stage IV in April

Hello lovelies!
Just wanted to stop by and leave a message of hope. I have had a long battle with breast cancer since 1998 in both breasts. Second diagnosis was inflammatory. I've been on pretty much everything out there for Her2 and got my mets down to the size of a quarter on my sternum. I had radiation to that spot in 2011 and haven't heard a peep since. Still on vitamin H and Zometa. I rarely post. Hoping my thread will offer hope to someone on this site.

8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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Old 03-17-2019, 10:25 AM   #2
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
Re: Will be 8yrs NED from Stage IV in April

Congratulations on all those years and surviving so well the struggle. My best wishes for the future.....and yes you do offer hope and thank you for that!


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
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18

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Old 03-17-2019, 04:43 PM   #3
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Location: Hershey, PA. Live The Sweet Life!
Posts: 2,002
Re: Will be 8yrs NED from Stage IV in April


You great news is so encouraging! Thank you for posting! Here's to a lifetime of NED!!!


Smile On!

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

13 Years NED
I think I just might hang around awhile....

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Old 03-19-2019, 06:48 AM   #4
Donna H
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Join Date: May 2014
Posts: 296
Re: Will be 8yrs NED from Stage IV in April

Always great to read these types of posts. Thanks and congratulations for many, many more years...no, lets go with many, many more decades of hope.
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Old 03-20-2019, 08:13 AM   #5
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Location: Millsboro, Delaware
Posts: 140
Re: Will be 8yrs NED from Stage IV in April

Thanks for the update, LOVE hearing this!!! I'm 4 years stage 4. Currently on my second trial and praying for many more years
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Old 03-23-2019, 03:25 PM   #6
tricia keegan
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Location: Ireland
Posts: 3,463
Re: Will be 8yrs NED from Stage IV in April

Sorry I'm late chiming in but many congrats Kim, your post will give hope to so many!
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 03-25-2019, 08:24 PM   #7
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Location: Thornhill, Ontario Canada
Posts: 2,319
Re: Will be 8yrs NED from Stage IV in April

Great news Kim!
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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Old 03-28-2019, 10:23 PM   #8
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Location: Misty woods of WA State
Posts: 4,128
Wink Re: Will be 8yrs NED from Stage IV in April

Hello Kim!
So very nice hear a peep from YOU, rather than the cancer.

Wonderful that you are in my club with mets under control/shut down. Love knowing that you have prevailed. Keep living your life and peek in here once in a while.
"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 04-06-2019, 09:40 AM   #9
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Posts: 293
Re: Will be 8yrs NED from Stage IV in April

Ditto what Laurel said! It's always encouraging to know there's hope!
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Old 04-13-2019, 04:22 PM   #10
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Posts: 59
Re: Will be 8yrs NED from Stage IV in April

Congrats Kim!! I will be joining the 8 year club with you this year! Diagnosed stage 4 de novo in 2011 with a three month old and Mets to my liver, lungs and throughout my bones I am on vitamin H and Tykerb since 2012. Never loose hope!
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)

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Old 04-19-2019, 02:59 PM   #11
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Join Date: Mar 2011
Posts: 70
Re: Will be 8yrs NED from Stage IV in April

Great news Kim and Kai! I will be joining the 9 year club, Diagnosed stage 4 in 2010. Continue on herceptin. Offering encouragement to others that there is hope.
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
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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Old 04-27-2019, 04:49 PM   #12
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Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
Smile Re: Will be 8yrs NED from Stage IV in April

Loved reading your post it put a huge smile on my face!
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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Old 04-29-2019, 12:55 AM   #13
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Location: Melbourne, Australia
Posts: 494
Re: Will be 8yrs NED from Stage IV in April

Coming up behind you, Kim, Kai and Diana - currently 7 years stage IV. But not forgetting all those who haven't made it so far. Often think somebody should be studying why some of us continue to thrive.
Best wishes to all..... Pam
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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