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11-28-2009, 04:47 PM
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#1
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Junior Member
Join Date: Nov 2009
Location: central Ohio
Posts: 1
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Newbie to BC......
Hello all,
I am new to this site and just wanted to say Hello to all my BC family now that I am er+/pr+ and Her-2+. Just Dx. 10-30-09 with biopsy coming back positive (3.7cm), so performed left breast mast. Had 1/16 positive nodes and will be starting Chemo with TCH on 12-09-09. Having port installed at 7:30am and 1st Chemo at 9:30am-same day! Should be a long day. Have PET-CT scan scheduled for 12-04-09 to see if spread, and to learn Stage and Grade. Muga was 55: 11-25-09. I am sure I will in visiting this site while I am starting my next journey with BC. Hope to meet a lot of nice people who can help me when times are tough and when I might have a question or two. Thanks for your time.
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11-28-2009, 05:27 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Newbie to BC......
Hi Janokee and welcome,
I'm so sorry you have to join us but glad you found us.
Herceptin has changed the dire prognosis many of us had, and you'll be encouraged to see there are many long term survivors here at all stages thanks to this drug.
I found chemo to be easier than I expected although certainly no picnic!! Please know there are many here to answer and help any questions you may have.
Good luck with the rest of your tests and I'm looking forward to getting to know you better 
__________________
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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11-28-2009, 06:02 PM
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#3
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: Newbie to BC......
Hi Janokee,
Good luck on you port placement and first treatment.
Welcome and dito on what Tricia said.
Alice
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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11-28-2009, 06:29 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Re: Newbie to BC......
Welcome, Jan. Like everyone else, sorry you have to be here but you came to the right place, no better place on the net. Anything you want to know, anytime you have a question, just post and someone will answer.
Good luck getting your port and your first chemo.
Keep in touch with us.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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11-28-2009, 07:20 PM
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#5
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Newbie to BC......
The 9th IS going to be a long day. Be sure to dress warm and comfy. Bring things to pass the time. Reading, iPod, journal, snacks.
Ask us any questions you have.
Keep the faith. Keep us posted.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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11-28-2009, 07:25 PM
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#6
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Senior Member
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
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Re: Newbie to BC......
Jannokee--
Welcome to a site filled with the most caring and loving women who spend time in the selfless service of others with HER2+ breast cancer---
-glad you found the group, but sorry that you had to become a member of this group of women-
Please know that this is a journey of the mind, body and soul and we are here to support you--
with love--
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED
12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line
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11-28-2009, 08:46 PM
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#7
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Newbie to BC......
Jannokee,
Welcome to the Board.
There is a 'Search' button on the gold bar on top. Put in any key word and you will find everything our members have contributed on the subject.
Another tip that took me a little while to figure out is that there are often many 'threads' going on at the same time. To see all the threads, click on the board title in blue highlight. The threads that have received new postings will be in 'bold face'.
Welcome again.
__________________
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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11-28-2009, 09:07 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Newbie to BC......
Hi Jannokee, Welcome to the club no one wanted to join. But when it comes to dealing with Her2 breast cancer there is no better place then right here. We welcome you into our Her2 family & look forward to answering your questions, offering up support...or if your just having a bad day and want to vent...we will be here.
The 9th will be a very long day for you so it really is a good idea as Bonnie mentioned to pack some things for your day. The chemo rooms are ususally a bit chilly especially since your just sitting for hours...so dress in something comfy and cozy. The chemo rooms usally have blankets to throw over your legs if you happen to need one.
You might want to pack a small lunch of some type, along with some snacks to nibble on in case you get hungry. Take some bottled water...always stay hydrated. Your first infusion will feel like the worse...only because it's the fear of the unknown. It usually turns out to be a major relief once your done that day because it's nothing like you expected. (In a good way.) I'm glad you found us...we will all be here to help you in any way we can. Hang in there. Remember...just take one day at a time.
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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11-29-2009, 04:01 PM
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#9
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Newbie to BC......
Welcome aboard !!
I ditto the advice about dressing warmly. Bring a sweater, wear nice warm socks, bring some snacks, water, and something to do while you are waiting.
Going to most chemo rooms is like going to Alaska.
The rooms are pretty cold for the machines and most of the medicine they put inside people comes out of a refrigerator.
Hospital departments that have alot of machines are also cold, so make sure you dress warmly for those places too. I would also advise you to wear clothes that do not have metal zippers, buttons and that sort of thing. If your clothes do not have metal you might be able to wear your own clothes under the gown for tests.
Good luck with all your treatments and tests and stay positive.
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11-29-2009, 08:34 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Newbie to BC......
Welcome Jann,
Come here anytime you need a friend, a shoulder, answers---we are all here for you anytime. If you have questions, someone will have answers. If you need to vent--we have good ears.
Sorry you had to join us, but---there is no better place no that you are "one of us".
Keep in mind---its all doable.
__________________
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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11-29-2009, 10:09 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Newbie to BC......
Hi Janokee...you are right about meeting great people here in our Her2 family...for that is what we are!!! Please visit often with questions, concerns, fears, and success!!! XO Suzan
__________________
 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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11-30-2009, 06:18 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Newbie to BC......
You've already gotten lots of good suggestions from others. I just want to add my support to you on the 9th and throughout your treatments. This is a great site for a wealth of information and unending compassion and encouragement. Glad you found us.
__________________
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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12-01-2009, 10:46 PM
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#13
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Newbie to BC......
Hi Janokee,
We are here to give us support to one another and make this journey less 'heavy' with the kind support and information provided by all our her2 sisters, so you are welcome to this wonderful board, and do not hesistate to ask anything you may want to know. I know that you will have a lot of questions that I am sure our sisters in the board can help you with.
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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12-04-2009, 09:59 AM
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#14
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: Newbie to BC......
Welcome to the group and I hope you will get a lot of useful information, I know I have.
__________________
-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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12-04-2009, 01:39 PM
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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: Newbie to BC......
Janokee ,
Well to our group. Please let us know how things are going.
Amelia
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12-04-2009, 06:22 PM
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#16
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Newbie to BC......
Hi Janokee,
Welcome, you couldn't find a better site or more support, love and encouragement anywhere else. In your darkest moments, this site with give you a ray of light and what you need to get up and go on. These women have been my beacon, even doing more for me than anti anxiety medication could. Come back and ask questions, nothing is too much. You will always find someone to answer you and give you that spark you need.
All the best,
Good Luck
Dawn
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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12-05-2009, 01:18 AM
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#17
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Newbie to BC......
Welcome to our very special family. You will receive great support and help with all and any questions.
I had TCH treatment also. So if you have any questions just reach out. Wishing you the best for Wed.
Regards,
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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12-18-2009, 01:12 PM
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#18
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Re: Newbie to BC......
welcome to a really great place! don't be afraid to ask any questions you have!!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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