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04-29-2010, 07:29 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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FIVE & 1/2 years NED in my head
I would like to add to the string of posts with postive news.
After having 2 tumors found in my brain in January of 2003, I now have joined the Five Year Brain Mets Club.
My rad onc looked me in the eye today and said, "You know you are in a very special group."
I replied,"Yes, something like 2% or less." He said, "Or less."
He seemed to be trying to see right into me to fathom the reason for my success against my cancer. Especially since he knows I have been off Herceptin for 18 months now.
Have blood work and scans again in mid-June, which will take me up near my 10 year mark of diagnosis. Very hard to believe!
__________________
"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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04-29-2010, 07:38 PM
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#2
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: FIVE & 1/2 years NED in my head
Big congrats Steph!!
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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04-29-2010, 07:52 PM
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#3
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Senior Member
Join Date: Nov 2004
Posts: 190
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Re: FIVE & 1/2 years NED in my head
Congrats Steph!!!
__________________
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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04-30-2010, 06:01 AM
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#4
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: FIVE & 1/2 years NED in my head
Congratulations Stephanie. You know you are my hero too. I could not have done the vaccine without you.
Amelia
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04-30-2010, 06:04 AM
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#5
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: FIVE & 1/2 years NED in my head
Well done Steph. You offer hope that we can beat this thing! Big thanks also to Christine and Joe for their work running this online group.
Ellie
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04-30-2010, 10:25 AM
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#6
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Re: FIVE & 1/2 years NED in my head
I had always suspected that there was nothing there.
GREAT NEWS !!
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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04-30-2010, 10:36 AM
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#7
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: FIVE & 1/2 years NED in my head
You are an inspiration Steph. You and Christine both. You give me so much hope. I hope to be in the 5 year club myself one of these days. I've got 4 years to go but with hope and faith, I will get there. Someday that percentage will be much MUCH higher. Thank you for continuing to inspire so many of us. I wish that when I initially Googled "brain mets breast cancer survival" your picture and story would have popped up instead of all of the other grim stuff out there. These stories of success need to be told. And I am glad this website is here for us to tell them.
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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04-30-2010, 11:28 AM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: FIVE & 1/2 years NED in my head
This is certainly great news !!!!!!!! Keep up the good work. Whatever you are doing is working.
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04-30-2010, 11:59 AM
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#9
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: FIVE & 1/2 years NED in my head
Great news, Steph! Wishing you many many more NED years.
hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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04-30-2010, 02:50 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: FIVE & 1/2 years NED in my head
Steph - Way to go! I was going to say what Joe did, but the truth is there is definitely SOMETHING special going on there...
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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04-30-2010, 03:56 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: FIVE & 1/2 years NED in my head
Wonderful news Steph, many congrats to you!!!!! xx
__________________
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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04-30-2010, 04:59 PM
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#12
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: FIVE & 1/2 years NED in my head
Absolutely terrific news!!! Ceesun
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04-30-2010, 05:13 PM
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#13
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: FIVE & 1/2 years NED in my head
Steph
I am so very happy for you. I wish you many, many, many more years of NED. When I first logged onto this site last year, I read many of your posts and they gave be great hope. Now, you are sharing again with some very good news. Sending hugs your way.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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04-30-2010, 06:33 PM
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#14
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: FIVE & 1/2 years NED in my head
Great news Steph! You are a source of strength and an inspiration to all of us here. I am thrilled you are doing so well.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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04-30-2010, 06:41 PM
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#15
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Member
Join Date: Mar 2010
Location: Eastern CT
Posts: 10
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Re: FIVE & 1/2 years NED in my head
Your a a true survivor.... congratulations and best wishes.
Pat
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04-30-2010, 10:26 PM
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#16
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: FIVE & 1/2 years NED in my head
Steph,
That is wonderful news and makes us all feel so good.
I am thrilled for you.
What a very special day to hear great news.
Keep it coming.
Hugs,
jean
__________________
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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05-01-2010, 06:17 AM
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#17
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: FIVE & 1/2 years NED in my head
Steph, your post gave me goosebumps and made my eyes sting! I am so very pleased that you continue to do so well. When I get scared for my sis, I come here to be encouraged and inspired. As my oncologist used to say, "Keep up the good work!"
Barb A.
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05-01-2010, 03:25 PM
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#18
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: FIVE & 1/2 years NED in my head
Congratulations Steph. You are amazing !!
__________________
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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05-01-2010, 07:18 PM
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#19
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: FIVE & 1/2 years NED in my head
Congratulations, Steph, and thanks for all you do for all of us. You are truly one of a kind and very special. Just last night Joe and I were grilling out (he likes his ribeye steak medium rare with 2 or 3 pieces of bacon laid across the top and if you really want to impress him serve it to him with a small side of chimichurri sauce. Whenever I cook for Joe I like to have a "fake steak" that I flip around alot just for show, you know, with alot of sizzle and pizzazz. He loves that sizzle. He looks every time.) He looked up at the sky, took a healthy swig of his gin and tonic, and said, "you know, Bill, that StephN is one hell of a gal. Hey! You're not overcooking that steak are you?" I jumped a foot in the air. For those who don't know Joe, you never, ever want to overcook his steak. "No, Joe, it's gonna be just perfect, just like last Saturday, honest! Yeah, I agree, StephN is a real sweetie." "Ok then, Bill, I think it's time that you brought that steak over here and oh, yeah, PM Steph for me and tell her congratulations"
__________________
For Nicola
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05-01-2010, 07:59 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: FIVE & 1/2 years NED in my head
Steph,
What a wonderful inspiration you are, and what a wonderful person to continue to share your story of hope and joy to so many who need that hope.
May you remain forever NED!
__________________
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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