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11-05-2019, 09:49 PM
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#1
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Member
Join Date: Nov 2009
Location: Melbourne,Australia
Posts: 8
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15 years later
Now 15 years NED after stage 3, grade 3, 19 + nodes !
I hope this info is useful to those in the early stages of their journey.
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![](signaturepics/sigpic3657_2.gif) Diagnosed Oct 2004
Stage 3,Grade 3 Er-,Pr-,Her2 +++
19/21 positive nodes and some axillary spread
Rt Lumpectomy and axilla clearance
AC 4+ T4
6 weeks radiotherapy breast and axilla and clavicular nodes
2 years herceptin (36 doses) 3 weekly
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11-06-2019, 08:49 AM
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#2
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: 15 years later
Dear "Kitty9,"
I am sorry I do not know or recall your actual name, but I do want to thank you for posting. Your story is an inspiration to those who are entering their own cancer journey. I remember the fear and uncertainty. Here you are 15 years after a Stage 3, 19 positive nodes diagnosis! Wow! In this season of Thanksgiving (November is Thanksgiving in the US) I am thankful for your survival and to all the many health professionals who fought to make a Her2 diagnosis no longer a death sentence. Thanks be to God for Dr. Slamon and Herceptin! May you enjoy many, many more cancerversaries! All the very best!
Laurel
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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
15 Years NED
I think I just might hang around awhile....
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11-19-2019, 04:12 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 15 years later
Kitty 9, you're about a half year ahead of me so I'm delighted to wish you continued good health and remission. So sorry I can't recall your name either but love your cat avatar which looks very like my asian Jack!
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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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11-21-2019, 12:11 PM
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#4
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Senior Member
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
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Re: 15 years later
Congratulations - you are a true warrior and inspiration!
__________________
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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11-26-2019, 03:51 PM
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#5
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Senior Member
Join Date: May 2014
Posts: 307
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Re: 15 years later
Thanks for the update. Have a wonderful Thanksgiving!!
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03-31-2020, 05:04 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: 15 years later
Hi All
I am delighted to see this post, to encourage others who have landed in the land of bc, and to see others again who have shared "the journey".
(As a stage 1 from 2002, I am still NED at age 69, moving slower... and still kicking.)
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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04-01-2020, 06:12 AM
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#7
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 15 years later
Congratulations AA, good to know you're doing so well still!
__________________
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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04-01-2020, 02:24 PM
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#8
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Senior Member
Join Date: Sep 2005
Posts: 414
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Re: 15 years later
Hi Kitty9 and everyone else,
Nice to see some old familiar names. I was diagnosed in 2003, so only come back on every few years or so. Glad to see people are keeping well.
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04-01-2020, 10:05 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: 15 years later
Wonderful to see you both here!
Just wanted to add this bit of odd history... The abrupt slowdown in metabolism that came with chemo (and resulted in major weight gain for me). which lasted despite all efforts until very suddenly last year, when I lost 40 pounds without trying at all. I am now back to wearing the same size as I wore at the time of diagnosis at age 52 (and at age 29 as well). I haven't had any disease process that I know of, and I'm still active although slower. It remains a mystery.
I am NOT complaining.... (but if I could just get my thick shiny dark long hair back....*sigh*)
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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04-04-2020, 10:45 PM
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#10
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 15 years later
Thanks for the post Kitty. Very nice to know more of us are still kicking.
Hey there AA!
So good to "see" you checking in. Great to hear you have shed some weight that vexed you for so long.
I am still at it and also not as peppy as before, but slogging through!
How is your hubby? I still have the same email addy.
__________________
"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 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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04-14-2020, 07:13 PM
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#11
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: 15 years later
So happy for you. Congratulations.
__________________
"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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05-14-2020, 12:45 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: 15 years later
Hi Steph! I can't BELIEVE how many years have gone by since we last met....!!! A few changes on this end since then, and I will message or call so that I don't get too longwinded here... The world is upside down for sure for an awful lot of people right now....
AA
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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05-27-2020, 08:33 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 15 years later
AA -
I am around. Same home phone. Same email address. Love to hear from 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.
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 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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05-28-2020, 07:34 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: 15 years later
Morning, Steph! If you are out and about, I've left a message on your home phone, will definitely try again later today.... SO good to hear your voice message! Golly...... 18 years (!) since being BALD and sharing whatever we could in dealing with it all.... Herceptin was new then.... so much to share and find our way through....
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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06-01-2020, 05:35 PM
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#15
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 15 years later
Good to connect back with some of the "old timers" here! We can be a tough bunch. Keep well, and do what you can to Wage Peace.
__________________
"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 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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09-18-2020, 03:44 AM
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#16
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: 15 years later
Greetings to all. In the middle of the night I am checking in. As always, it is a treat to see familiar names and pictures. May those actively battling BC right now, draw strength from those of us who are still around after similar DX years ago. I always feel grateful for the dedicated scientists and doctors who keep improving the treatments and bringing long lives to so many. Thank you to the team that keeps our site going!
Love to all, Catherine
14.5 years NED
__________________
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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