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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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04-20-2007, 05:29 PM
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#4
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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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04-20-2007, 07:49 PM
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#5
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Marie,
My info. is in my signature. I, too, have been considered NED since mastectomy July 28, 2005.
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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04-20-2007, 08:21 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 823
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Mt history is in my Siggy as well. I am 2 yrs. NED
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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04-20-2007, 08:52 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Marie, Like the others here have said...my signature has all my info. I have been NED since the date of my surgery which was 1-3-06.
(I just LOVE Tricia K's story. I love to read it when I am feeling a bit down...it ALWAYS picks me up and puts a smile on my face. What a aweseome women.)
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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04-20-2007, 09:53 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Stage IV survivor
Dx stage 2a in 2001. Stage iv in 2005 (Sept)..NED 9 weeks later and still NED.
(18 months)
Jackie
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04-21-2007, 10:17 AM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Marie...my details are as follows,
Tricia keegan
Diagnosed June '05 stage 2 grade 1
triple positive ..IDC 3/9 nodes positive.
Also doing fine and hoping for 2 years out in a
few months!!
__________________
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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04-21-2007, 10:47 AM
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#10
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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 Am A Srvivor!
"95 dx w/4th stage invasive/infiltrating lobular carcinoma w/2 out of 18 lymph nodes involved. '98 multiple mets in the liver. Her2+ -- 80%. Taxotere Sept '98 thru May '99. Herceptin Nov '98 to present. Wkly '98-'02. Triple dosage every 3 wks '02-present. NED. Just extremely fatigued most days, except when I receive Procrit (and now Aranesp) to boost my flagging red blood cell count -- which has become an issue with Medicare and most insurance cos who don't want to pay for the $7,000 injection for NON CHEMO patients. Herceptin patients receive a monoclonal antibody and have been left in the lurch on this issue, in the last month! I remain positive it will be resolved, but worry that if my dipping red blood counts go unchecked, my health will obviously reflect that. Do I have to become hospitalized before I get help? Who will speak for this small group who have what my doc calls "chemo-induced anemia". Haven't been on "chemo" since '99. All blood tests show no reason for this red blood slippage. 1 shot last 3 mnth usually. But NO shot, leaves me...ANDREA PS PUT "YOUR" NAME ON THE SURVIVOR'S LIST YOU ARE ACCRUING! THINK OF YOURSELF AS A PART OF THAT GROUP. INSIST UPON IT! DAILY! AND DON'T FORGET TO SAY THANK YOU FOR YOUR GOOD FORTUNE WITH EACH NEW DAY... EACH DAY IS A GIFT.
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04-21-2007, 12:34 PM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Could set up a poll ...
A survivor poll that would ask how many years in remission and their stage.
Would work on it, but no time today. I think it is a worthwhile idea.
You will see by my story at the end of my post that I am over six years since dx and more than 5 years NED on Herceptin, being stage IV. Had extensive liver mets and poor prognosis, but fought really hard with some tough drugs in the mix to achieve a complete response. Like the amazing TriciaK I have used guided imagery in my healing.
Hope these answers help your husband to have a little faith, even though this is a sneaky, pernicious disease.
My best advice - cut out the sugar as cancer feeds on simple sugars.
__________________
"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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04-21-2007, 01:31 PM
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#12
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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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Cancer Loves Sugar
So did I. Chocoholic. But since I heard this pearl of wisdom from several different sources, and found sugar to be a trigger food for the IBS (IRRITABLE BOWEL DISORDER) that came with the Taxotere in '98 and never went away -- I have decided to stay off of sugar. Been sugar-free since '04! Not a single bite even of birthday cake. I consider it poison. So, I' m w/Stephen on this. Amazing story of heroics and determination. Expectation and Intention = End Result, I always say. I was adamant about not giving in to my poor prognosis. SOMEONE has to fall in the Survivors's group. They're the most passionate, positive focused of the lot. THE BRAVEST ARE THOSE WHO HAVE THE CLEAREST VISION OF WHAT IS BEFORE THEM, AND YET, GO OUT TO MEET IT. YOU MUST DO THE THING YOU THINK YOU CANNOT DO AND BELIEVE IN YOUR POWER TO ACHIEVE IT! We are each just this side of becoming a miracle! God bless... Please keep us all updated on your findings and ponderings. Networking is a grand way of supporting one another. ANDREA
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04-21-2007, 01:38 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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My story is my signature - except to add - eat right and exercise at least 5 hours per week.
__________________
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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04-21-2007, 02:57 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Ohio
Posts: 212
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My story is in my signature as well--looking forward to 6 years of survivorship after a poor prognosis in 2001.
__________________
Audrey
diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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04-21-2007, 04:51 PM
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#15
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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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#16
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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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#17
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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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#18
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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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#19
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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, 10:23 AM
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#20
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Survivor Survey
My story is in my signature PLUS eat tons of veggie and fruit amd almost cero fat
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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