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04-20-2007, 12:41 PM
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#1
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Senior Member
Join Date: Mar 2007
Location: State Motto='HOPE'
Rhode Island
Posts: 28
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Survivor Survey
Morning My Girls, just stopping in to tell you how proud I am of you all, and again, every day you fight the fight, YOU ARE A SURVIVOR!! In the mean time, I am asking for you all to send your name, cancer stage, and time in NED. My husband would be very exstatic to have a list of survivor time in remission and your name would be just to send you a thank you. Please my friends, I am begging. Some of you have already written, but we need to start a "List of Survivors".
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04-20-2007, 01:05 PM
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#2
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Dear Marie,
I was diagnosed in Jan. 2004
Stage 1, no nodes, Grade 3, ER/PR/Her2 positive
lumpectomy, rads, Zoladex & Arimidex
Doing FINE!!!!
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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04-20-2007, 01:41 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Marie, you probably already know all of my story, but here are the quick facts:
1985---Diagnosed with BC , double mastectomy, reconstruction, nothing more
1990---Mets to vertebra, T9 and T10.Tamoxifen, alternative treatments,
including hypnosis.
2004---heart attack ; CT revealed lung mets, now her2. Treated with herceptin, navelbine and femara for 6 months, then just femara and herceptin until ejection fraction was 40. (9 more months).
2005---NED
2006---still NED, had triple bypass
2007---still NED, treating heart failure and cardiomyopathy,Cancer is stage iv
Hope to hold the cancer at bay indefinitely with femara, good diet,
positive thinking, self-hypnosis, and prayer!
Hopes this is helpful in your research. THere are a lot of wonderful survivors on this board! Hugs, TriciaK, St George, Utah
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04-21-2007, 04:51 PM
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#4
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Member
Join Date: Mar 2007
Posts: 5
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My Mom is NED (I picked up that term from this Board)!!
Hello everyone
This is for my mom. I wish I had found this board a few months ago. Only came across it recently. The stories shared on this board have been a wonderful.
I finally managed to write down the details of my mom's case to share with everyone. I took a lot of comfort reading +ve news from everyone as we were going thru the last few months.
My mom was diagnosed by my wife when she came to the US to help us with our then unborn baby boy. She diagnosed her the same week we had the baby and it was a week of unbelievable joy mixed with fear/sadness as we soon came to know she was stage 4.
It has been 7 unbelievable months and the baby and grandma are doing well. I realize that we were lucky with her responding so well to Herceptin but I am forever grateful at how strong and supportive my wife has been and how strong my mom has been thru this to get us here. It helps that both of them extremely strong willed and nothing fazes them. I recognize the same strengths in so many of you when I read the messages here. Thank you for being on the board and sharing.
Please drop me a line if you have any questions
/C
__________________
For My Mom:
Diagnosed: sept 22, 2006 at age 58
Her 2+++, ER-/PR-
Rt Breast 5cm tumor and 1 Lymph node under arm +ve, Biopsy and FNA
1 small suspicious lesion on liver 1cm in diameter, Could not be biopsied due to location. Radiologist 90% sure it was a Met. Treatment plan assuming Stage IV.
---------------------------------------------
4 DD A/C
New Cat/MRI of liver showed shrinkage of lesion. Confirmed stage 4 (Most probably)
12 Wks Taxol/Herceptin
Restaged, all scans -ve
Took her to Dana Farber. Surgeons recommended local mgmt of tumor thru lumpectomy and lymph node biosy
Surgery 4/23, Lumpectomy 13 nodes under rt arm
Clean margins and -ve for cancer cells
NED
Scheduled for 33 rads starting 5/9
Hoping for a long period of NED!!
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04-23-2007, 08:47 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
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my story is on my sig as wel!!
__________________
Michele Ulmer
dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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04-24-2007, 04:31 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: NYC
Posts: 250
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I was dx'd two years ago. All deets in my sig.
Thanks for doing this.
Jen
__________________
dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com
"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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04-24-2007, 08:10 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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My story is also in my signature. My oncologist agrees that I have been NED since my surgery 6/14/05.
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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04-24-2007, 09:22 AM
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#8
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Senior Member
Join Date: Feb 2006
Posts: 437
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Hi Ladies,
Add me!
__________________
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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04-24-2007, 06:51 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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my story in my signature
HI,
I have also been NED since my mastectomies (Apr '05). My onc recently switched me from tamoxifen to aromasin.
__________________
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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04-24-2007, 07:57 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Hi,
I was diagnosed 2/04, stage 3b/4 inflammatory, was given a very poor prognosis (6-12 months) and here I am over 3 years later with last 2 PET scans very good. I have skin mets and am starting on Tykerb/Xeloda. Hope abounds through support, love and God. Love, Vickie
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04-24-2007, 08:38 PM
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#11
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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I was diagnosed March, 2006 and had a lumpectomy April 19, 2006, (my husband's birthday. I finished chemo late July, 2006 and I am still receiving herceptin every 3 weeks with little problem other than bad nails and fatigue. My mammogram was clear on March 1, 2007 and I have made it through the first year with NED.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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04-25-2007, 12:28 PM
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#12
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Junior Member
Join Date: Apr 2007
Location: 15135 Rock Creek Road
Shasta, CA 96087
Posts: 3
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3 year survivor
I will be a 3 year survivor in June. I am doing well and still on Hercepting every three weeks. I helps to hear form those who have been around for awhile fighting this disease. Good luck to you.
Judy
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05-02-2007, 02:57 PM
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#13
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Member
Join Date: Nov 2006
Posts: 6
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diagnosed 2003 DCIS
lumpectomy , 3wks rads
no node involvement
not hormone deoendent
2006
mets to liver
6 cycles EC chemo
tumour markers down from 1200 to 28
classed as in remission , doing well
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05-02-2007, 03:01 PM
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#14
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Member
Join Date: Nov 2006
Posts: 6
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follow from my previous post
i am now 56
progression to stage 4 was a total shock but responded well to chemo
test for her2 status came back towards the end of chemo so herceptin will be an option for me , i feel i am winning this battle and i am surviving
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05-14-2007, 12:41 PM
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#15
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Junior Member
Join Date: May 2007
Posts: 2
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What is NED?
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05-14-2007, 01:54 PM
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#16
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Senior Member
Join Date: Mar 2007
Location: State Motto='HOPE'
Rhode Island
Posts: 28
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Hey Honey
NED means "No Evidence of Disease" and it is something I hope we all get to experience at some point, whether it be ourselves or the persons we are caring for. Best of Luck.>>Waiting For A Miracle>>Marie G
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05-14-2007, 02:15 PM
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#17
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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I Wish You All Ned!!!!!!!!!!!!!
Bailey you are fantastic. You are wise not to wish bad things for anyone. Negativity has a way of rebounding and boomeranging back to us. Feel sad for him and happy happy for you, as you should. Smart lady! If you KNOW you are going to survive -- YOU WILL SURVIVE! It's a Universal Law! Whatever you KNOW will come to be. KNOW you will be okay. Do not accept anything less. You have the power to draw your dreams to you, with the power of the energy of your thoughts. Consciously choose to think of victory as much of the day, every single day!!!!!!!!!!!!! That's your new job. Draw it to you. Don't ever give your power away to negativity, fear, anger, grief, resentment, remorse, louses in the world or the inability to forgive. That would mess up your energy and your life. Refuse to give your power away to any one or any thing. Ever. Love that you work out, meditate and do some yoga. You are so on the right course! YOU WILL BE AROUND FOR A LONG TIME because you KNOW it and BELIEVE in yourself. That's the Lesson cancer taught me. I try to share it with everyone I meet. No matter what your adversity, and we all have a few, take that Lesson and that Message and live in joy and serenity, well and in harmony.
Keep us all posted on your experience w/tykerb/xeloda -- and stay as beautiful as you are. You are clearly a Winner.
I too wish you ALL well. Wishing you all reach NED status (no evidence of disease). STABLE! Magical words, music to the ears. You are all potential miracles. Don't ever stop having faith in your power to give that to yourself! Much love, ANDI<!-- / message -->
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05-14-2007, 04:59 PM
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#18
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Senior Member
Join Date: Mar 2006
Location: (Hill Country) Texas
Posts: 72
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NED 2 yrs. yesterday
You will see my details in my signature.
2 yrs. NED!!!!!!
__________________
Jackie
Stage II, Grade 2, DX 4-05
EP +, HER2 +++,
1 node+, 1.6cm
46 yrs. old at time of dx.
Completed Chemo 11-05
Completed 1 yr. Herceptin 8-06
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06-01-2007, 05:34 PM
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#19
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Senior Member
Join Date: Jun 2007
Posts: 37
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Survivor
If I did this right my history will be in my signature.
Kacey
__________________
dx 9-13-05 MRM (lt)on 9-19-05
IDC stage llb grade 2 3/24 nodes+
ER/PR- Her2+++
Groshong placed 10-13-05 and chemo started
TCH x6 and continue Herceptin for one year every 3 wks
Rads x 33 (at the end of chemo) finished 4-01-06
20 months NED
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04-20-2007, 05:29 PM
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#20
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Marie,
My history is in my signature. I've been considered NED since June 8, 2006 the day of my surgery.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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