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Old 11-05-2019, 09:49 PM   #1
kitty9
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Location: Melbourne,Australia
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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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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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Old 11-06-2019, 08:49 AM   #2
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 1,985
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

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

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Old 11-19-2019, 04:12 PM   #3
tricia keegan
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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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Old 11-21-2019, 12:11 PM   #4
jra40
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Posts: 260
Re: 15 years later

Congratulations - you are a true warrior and inspiration!
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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 11-26-2019, 03:51 PM   #5
Donna H
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Re: 15 years later

Thanks for the update. Have a wonderful Thanksgiving!!
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Old 03-31-2020, 05:04 AM   #6
AlaskaAngel
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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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Old 04-01-2020, 06:12 AM   #7
tricia keegan
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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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Old 04-01-2020, 02:24 PM   #8
Christine MH-UK
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Posts: 414
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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Old 04-01-2020, 10:05 PM   #9
AlaskaAngel
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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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Old 04-04-2020, 10:45 PM   #10
StephN
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Location: Misty woods of WA State
Posts: 4,119
Wink 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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Old 04-14-2020, 07:13 PM   #11
Mary Jo
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Location: Sheboygan, WI
Posts: 2,571
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

14Years NED

<>< Romans 8:28
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Old 05-14-2020, 12:45 PM   #12
AlaskaAngel
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Smile 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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Old 05-27-2020, 08:33 PM   #13
StephN
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Location: Misty woods of WA State
Posts: 4,119
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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Old 05-28-2020, 07:34 AM   #14
AlaskaAngel
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Location: Alaska
Posts: 2,017
Red face 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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Old 06-01-2020, 05:35 PM   #15
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,119
Wink 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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