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07-14-2010, 04:31 PM
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#1
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Still NED!
Got my scan results last week. Great news still no sign of cancer. It's been 4-1/2 years since I was diagnosed stage IV. I've been cancer free for over 4 of those thank God. So I continue as I have, with herceptin and taking all my herbs and supplements. I feel great and life is good. Just wanted to post some positive news for all the stage IV gals here. ..sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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07-14-2010, 04:43 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Still NED!
Sherry, Big congratulations...that is wonderful news. It's always good to have such positive news on the board. Now that you got your good results...go out and celebrate. May the rest of your yrs be spent with NED...what a great couple you two make. 
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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07-14-2010, 05:01 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Still NED!
Great news for you and all of us! Enjoy.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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07-14-2010, 05:03 PM
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#4
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Junior Member
Join Date: Jul 2010
Location: Southern Ca
Posts: 4
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Re: Still NED!
Congratulations!!!!!! Thank you so much for taking the time to post. I can't tell you how much it means to me to read that. Yes, go out and celebrate, you definitely deserve it. It is women like you who gives others hope. God Bless
__________________
Caregiver to Rosie
Diagnosed age 37
11/09 stage 2b IBC lumpectomy,
1/30 nodes+
Her2+, grade 3, er/pr-.
Said no to chemo and Rad even though it brings much judgement.
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07-14-2010, 05:44 PM
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#5
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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: Still NED!
Doin' the happy dance in your honor, Sherry! That is such wonderful news! I am praying NED for everyone on this site!
__________________
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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07-14-2010, 06:58 PM
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#6
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: Still NED!
Great job! So happy for you.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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07-14-2010, 07:16 PM
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#7
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Still NED!
Hi Sherry....What fabulous news. I'm so happy for you.
Also wanted to say that your profile picture is so nice. What a pretty lady you are.
Blessings and Peace to you,
Mary Jo
__________________
"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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07-14-2010, 07:41 PM
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#8
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Senior Member
Join Date: Apr 2010
Location: Louisiana
Posts: 53
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Re: Still NED!
Yay!!! that makes me happy tonight.
__________________
Diag 4/1/10
rt breast 2.4 cm grade III infiltrating ductal w/pos margins
sentinel nodes rt benign
tumor pT2, pNO, pMX
PQRI: 3260
began adria/cytoxan June 9 x 3wks x 4 then taxotere/herceptin 3wks x 4
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07-15-2010, 01:12 AM
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#9
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Still NED!
Congratuations! You looked fabulous!
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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07-15-2010, 02:22 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Re: Still NED!
well done! keep it up and stay on herceptin.....
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07-15-2010, 02:31 AM
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#11
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Still NED!
Brilliant news Sherry.Keep flying thr flag for us stage 4 girls.
Ellie
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07-15-2010, 04:43 AM
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#12
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Still NED!
Sherry,
So glad to hear the good news!!
Even for those of us still fighting the battle, you are a source of inspiration.
Each day is a victory for us all.
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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07-15-2010, 05:34 AM
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#13
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Still NED!
Congratulations Sherry, you look wonderful 
__________________
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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07-15-2010, 05:41 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Still NED!
Sherry - Such great news. Thanks for reminding us that NED is possible for stage IV. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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07-15-2010, 10:13 AM
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#15
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Still NED!
Congratulations, Sherry. You offer us stage IVers HOPE.
Amelia
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07-15-2010, 03:34 PM
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#16
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: Still NED!
Sherry, you're my hero! And looking fabulous too, I might add.
Would you mind sharing what supplements you take regularly? I keep tweaking with my formula and want to make sure I'm taking all the good stuff.
__________________
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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07-15-2010, 04:12 PM
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#17
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Still NED!
This is certainly good news !! Congratulations !!
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07-15-2010, 11:50 PM
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#18
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Re: Still NED!
The suplements that I take were recommended by a guy in Greece who is a nutrionalist and study the effects of supplements against certain kinds of cancer. He had posted on his site that for someone with breast cancer the three main supplements above all else they should be taking were Curcumin/Tumeric....I take 2000 mg. of that a day pill form. Grape seed...I take 1000 mg. of that pill form. And green tea...I take 1000 mg of that daily in concentrated liquid drop form, it enters the system faster. I have also begun taking shots of wheatgrass juice. This stuff is suppose to have all sorts of benefits to it. A shot of wheatgrass juice is equal to eating like 5 lbs of vegetables. It give you energy pluss also claims to have cancer fighting abilities. I've been doing all of this religiously since after I finished chemo and things have gone so well, I would hate to get off any of these....sherryg
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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07-16-2010, 12:14 PM
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#19
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Still NED!
Such great news Sherry!! Sounds like the combo your on is a good one!
You look terrific! Happy that you feel good too!
Lexi
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07-16-2010, 12:38 PM
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#20
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: Still NED!
Thanks for sharing your great news...and hope and optimism that NED is always within reach.
Take good care~
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