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Old 03-20-2010, 12:32 PM   #1
StephN
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Barb - Jones 7676 - an angel now

Dear friends -
Barb last posted mid-Dec. after her brain surgery. Since they could not get the part that was on a vessel, she continued on Tykerb and anti-seizure meds till a time when she felt that the tumor was advancing.

Her husband says she was the family organizer and was worried about leaving her family and how they would get along. Like her obit says, "She did not know how to quit."

He is not "the computer type" and asked that I post the following:

Barbara "Barb" Ann Lukowski
(December 6, 1957 - February 26, 2010)

Guest Book | Sign Guest Book
Send Flowers

Christmas
On Friday afternoon, February 26, 2010, Barbara Lukowski, age 53, finally succumbed to her battle with cancer. She was born in Chatham, MI on December 6, 1957 to the late William Carlson and Anna Ludwa Carlson. Barb was a courageous and determined woman who overcame nearly every challenge life presented her; she did not know how to quit. Her determination transferred to her unerring advocacy for the infirm, disabled, and disadvantaged. She dedicated her life to helping others. Even when she could no longer work, she volunteered her skills whenever she could. Barb was also an intensely creative person. She was always puttering in her gardens, painting, crafting cards, and taking photos. She combined her care for others and her artistic tendencies by always being behind the camera.
She is survived by her husband of thirty-three years Dennis, her children Alison and Paul, her mother Ann Carlson, and her brother William Carlson. Her family and friends are celebrating her life with a visitation on Monday, March 1, 2010 from 5:00 until 8:00 p.m. at the Bowerman Funeral Home in Munising. Barb’s funeral service will be Tuesday at 12:00 noon at the Funeral Home, with Pastor John Deal officiating. Honorariums in Barb’s name may be made to the Eric R. Beverly Foundation, which supports breast cancer survivors and their families.
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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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Old 03-20-2010, 12:43 PM   #2
Bill
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Re: Barb - Jones 7676 - an angel now

Dammit!.............Thanks for letting us know, Steph. She was a special lady and a real fighter. My prayers go out to the family.
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Old 03-20-2010, 12:53 PM   #3
sassy
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Re: Barb - Jones 7676 - an angel now

I continue to pray for the day when we will no longer log on to read these posts; when our sisters become angels at the end of a long, long life, rather than cut short by this insidious disease.

My thoughts and prayers are with Barb's family and friends, and with all of us who will miss her.
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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!

Last edited by sassy; 03-21-2010 at 01:17 AM..
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Old 03-20-2010, 01:23 PM   #4
Mary Jo
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Re: Barb - Jones 7676 - an angel now

With much sadness in my heart I once again say "good bye" to another "angel." May you be at peace Barb........

Love...

Mary Jo
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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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Old 03-20-2010, 01:29 PM   #5
Mary Anne in TX
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Re: Barb - Jones 7676 - an angel now

Barb, you are surely still flying high and striving with those "angel wings"! May God bless your family. Thank you for being part of my life. ma
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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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Old 03-20-2010, 01:56 PM   #6
Jackie07
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Re: Barb - Jones 7676 - an angel now

Barb,

Thanks for sharing your spirit with us. We'll miss you. RIP.
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Old 03-20-2010, 04:39 PM   #7
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Re: Barb - Jones 7676 - an angel now

Thank you Steph for posting....this has been a difficult year so far for many here....hoping our angels are watching over us, and protecting us from above....
Barb...heaven now has a little more Christmas
My sympathy to your family.
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 03-20-2010, 04:56 PM   #8
tricia keegan
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Re: Barb - Jones 7676 - an angel now

Thanks for the update Steph, albeit a sad one.

I can't believe we've lost another to this disease so soon, and will keep Barb's family in my prayer's
So sad to hear this. xx
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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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Old 03-20-2010, 05:33 PM   #9
Adriana Mangus
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Re: Barb - Jones 7676 - an angel now

So sad one more of our Angels is gone.

My thoughts and prayers are with Barb's family and friends.

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 03-20-2010, 06:43 PM   #10
Sherryg683
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Re: Barb - Jones 7676 - an angel now

I am also so sick and tired of reading about another lovely lady losing their life to this disease. It's about time that God plants the seed of knowledge into someones head so that we can get a cure for this. sherry
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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

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Old 03-20-2010, 07:09 PM   #11
flynny
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Re: Barb - Jones 7676 - an angel now

May she rest in peace and sending prayers for her family. This is just not fair. Sorry, but that's how I feel.

Sarah
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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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Old 03-20-2010, 07:14 PM   #12
Barbara H.
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Re: Barb - Jones 7676 - an angel now

I have been fearful of hearing this news. Thank you Stephanie for posting it. My thoughts are with Barb and her family.
Barbara H,
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Old 03-20-2010, 07:18 PM   #13
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Re: Barb - Jones 7676 - an angel now

Just sick to hear about Barb. Another Warrior Woman, gone way too soon to this horrible disease.

all the best
caya
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1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
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Old 03-20-2010, 07:41 PM   #14
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Re: Barb - Jones 7676 - an angel now

DAMN, DAMN This sucks so much. I HATE CANCER !!!

Thanks for letting us know Steph.

Prayers will be going for Barb's family during this difficult time.
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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
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Old 03-20-2010, 07:46 PM   #15
Faith in Him
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Re: Barb - Jones 7676 - an angel now

Another heartbreaking post. My condolences to Barb's family.
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2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
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Old 03-21-2010, 03:44 PM   #16
Patb
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Re: Barb - Jones 7676 - an angel now

My prayers to her family. Another loss, I get so mad
sometime, there have to be more treatments fast-tracked for the ones who need it. I know there is
work being done, but it is soooo slow.
patb
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Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
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Old 03-21-2010, 09:01 PM   #17
ElaineM
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Wink Re: Barb - Jones 7676 - an angel now

This is very sad news, but thanks for telling us Steph.
We have too many her2 angels, but hopefully they are looking after us from wherever they are.
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Old 03-21-2010, 10:50 PM   #18
Paty
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Re: Barb - Jones 7676 - an angel now

Barb will be missed, so sorry to hear these news.
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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
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Old 03-22-2010, 08:12 AM   #19
PinkGirl
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Unhappy Re: Barb - Jones 7676 - an angel now


I was afraid of this when we hadn't heard from Barb in so long.
She was a real fighter ... so sad.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 03-22-2010, 08:50 AM   #20
Shobha
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Re: Barb - Jones 7676 - an angel now

My heartfelt prayers and condolences for Barb's family.
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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