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06-29-2008, 08:53 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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As I posted earlier, my 6 months checkup this month shows I am also NED. It will be 4 years tomorrow (June 30) that I had the heart attack that led to the discovery of my her2cancer mets. I would never have discovered it otherwise in time. Herceptin saved my life. As many of you know, it has also been 23 years now since my first BC diagnosis in 1985, so I am a long time survivor of BC and also her2. THere is more hope now than there has ever been. Hang in there, fellow warriors! Our prayers for each other are of great value. Hugs, Tricia
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06-29-2008, 11:06 PM
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#2
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Just for the record, I have 2 very good friends here where I live. Both had bc in their early 40s. One was stage 1 and the other was stage 2 with several node involvements. It has been 10 yrs plus for both of these women! They each had chemo but no herceptin since it was not available.
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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07-02-2008, 01:15 PM
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#3
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Hey....
.....doing the bump thing>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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07-02-2008, 01:38 PM
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#4
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Senior Member
Join Date: Nov 2005
Posts: 943
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6 Years Out And Hoping Myself And Others Will Forget That I Ever Had The Big C. But That's A Hard Name To Get Rid Of.
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Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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07-02-2008, 01:50 PM
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#5
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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MERENGUE! Diagnosed in November 2005. That's 31 month (more or less). God willing, I will stay NED.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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07-02-2008, 06:55 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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I wrote a really long post the other day--then lost it. So I guess the best thing I can share is that I am NED for 3 years and 4 months, and have every reason to believe I will stay that way. If I don't, there are many, many avenues of treatment and more being developed all the time.
__________________
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!
Last edited by sassy; 07-03-2008 at 05:55 PM..
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07-09-2008, 06:41 PM
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#7
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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I suppose I could say I am 8 months NED. With no node involvement, it would mean I was NED just post surgery?
I am encouraged by all the positive news.
Thank you,
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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09-17-2008, 09:47 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Just want to bump this up.
__________________
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.......
14YEARS NED!
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07-02-2008, 08:09 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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Ned
Hi,
I don't post very often, but had to respond to this post. As you can see from my signature, I had a huge tumor, but I am 3 years and almost 3 months out from my diagnosis and still NED!
Karen
__________________
Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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07-03-2008, 09:11 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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5 Years and 3 months out
and doing well...
__________________
Diagnosed 4/03/03, age 50
3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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07-03-2008, 02:30 PM
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#11
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Senior Member
Join Date: May 2008
Posts: 28
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14 months
It's been one year and two months since my diagnosis and every day is a gift.
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07-03-2008, 09:04 PM
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#12
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Senior Member
Join Date: Nov 2006
Location: Bedford, Virginia
Posts: 134
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Diagnosed in June 2006. Will be NED 2 years in September. Scheduled for an MRI in August, and I will breathe a big sigh of relief to past the 2-year mark NED.
__________________
- Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
- Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
- AC/Cytoxin combo - 4 treatments (dose dense);
- Taxol/Herceptin combo- 12 weekly treatments;
- Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
- BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
- MRI, 08/02/07 - NED
- 1 year Anniversary - 09/07; completed Herceptin 11/07.
- Mammo 02/14/08 - NED; MRI - 08/2008 - NED
- 2 year Anniversary - 09/08
- Mammo 02/09 - NED; MRI - 08/09 - NED
- 3rd year Anniversary - 09/09
- 5th Annivery - 09/2011 - NED
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07-03-2008, 10:45 PM
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#13
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Great idea! Love to hear those positive stories.....
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07-07-2008, 12:10 PM
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#14
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Senior Member
Join Date: Dec 2005
Location: virginia
Posts: 99
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Ned
NED for 4 years ! Whoooopeeeeeee !!! ( actually 4 years and 1 month but who is counting ) What a wonderful thread to find. this is so needed right now. Mostly lurk but had to respond to this. Also feel that this is my info home and celebrate each day as a "present" !! Hope we keep bumping this up for the newbies.
Bonnie
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07-07-2008, 03:32 PM
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#15
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Guest
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Hi everyone, it's Audrey here, checking up on my Her2 sisters using the library computer (we don't have our home computer working at the moment)--just wanted to chime in with my good news--diagnosed in July 2001 (huge tumor, many lymph nodes positive)--celebrating 7 years NED! I feel so lucky to have participated in the Her2 clinical trials back then and to still be here today and looking forward to many more tomorrows... Keep hope alive, there are lots of survivors out there these days!
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07-07-2008, 05:40 PM
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#16
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Audrey, I knew it was just a matter of time and you would check in long enough to add your NED status.  It's so appreciated. No doubt MichelleU is off enjoying her summer as is most...but I'm sure she will eventually check in here soon enough too. Because we can't forget her...she is 5 or 6 years out too. Wooo hooo to both of you.
Thanks again to Donna for starting this thread. Maybe we can get a few of the lurkers to join in here. I'm sure there are many more we haven't heard from. The more the merrier as they say.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-12-2008, 06:58 PM
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#17
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Senior Member
Join Date: Mar 2006
Location: Aurora CO
Posts: 75
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Audry, or anyone who knows how to reach her I would love to chat with you on your Herceptin journey... I have been searching for someone who was in the trials... Hugs and live life with love and laughter
Marily
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07-08-2008, 11:47 AM
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#18
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Thank all you ladies for the encouraging information and God Bless You all.
Amelia
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07-12-2008, 06:53 PM
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#19
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Senior Member
Join Date: Mar 2006
Location: Aurora CO
Posts: 75
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(Hi for some reason I cannot turn off the bold on this sorry...) I have been NED for almost 8 years my anniversary will be coming up soon. I was stage IV after finding a tiny lump two months prior.. Her2neu +++ est+++ prog+++ If not for Dr Slamon and Herceptin things would have turned out much differently. I am really looking forward to seeing the upcoming movie being made. I loved the book on the birth of Herceptin.
Marily
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07-18-2008, 05:25 AM
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#20
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Marilyn's poem reminds me of the "full story" of this disease. It's such a roller coaster ride and for some, one that goes on and on and on. The NED successes bring out the sunshine and gives hope for us all. I went for my herceptin infusion last Friday (took 5 hours there going round and round with the insurance folks, but seems I'm on for the next 6 months) and for the first time ever, Dr. K wrote NED on my chart. Little thing that's HUGE to my brain! I'm so lucky and grateful and prayful for warriors with battles yet to fight. For today I am NED and grateful. Those three letters written on my chart gave me encouragement to up my pace of returning to "normal" life. (Not sure I ever had one) But I continue to pray for those in the midst of battle. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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