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11-27-2006, 11:27 AM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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test results
Hi everyone, I hope Thanksgiving was a happy time with friends and family. Mine was. I had a CT and brain MRI on the 15th and the news is good (chemo brain is bad and now I can't remember if I posted this already-forgive me if I did-geez).
I have squeaked by another 6 months without any brain metastasis-woo hoo! My liver mets which are always the concern are better. The largest one has shrunk by 50% and another one of concern is gone. This is after almost 3 months of Navelbine/Herceptin. We have decided to continue with this treatment for another 8 weeks and re-scan then. I am doing great on Navelbine and so I am thrilled that it is working.
In typical 'Joy' fashion, I still have concerns. Is it really possible to continue this battle and NOT get brain mets? Is it possible that the Navelbine can keep working (Taxol/carbo was slow to work, but did and then plateaued)? It worries me that Tykerb has failed some of our beautiful ladies. It worries me that hormonal treatments used to work beautifully for me and now I may be hormonally resistant. It worries me that I worry so much-what a nuthead!
Love to you all!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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11-27-2006, 03:05 PM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 290
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Hey hey !
Congratulations on your test results Nuthead...lol. Glad to hear you are doing well. Keep up the god work, but give yourself a break once in a while. I of all people, have finally learned to think about something else for a few minutes. It lets me rest up for other battles down the road that might crop up. Take care Joy, and enjoy life just a little.
Tom
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11-27-2006, 03:12 PM
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#3
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Joy,
That is great news...and if you are a nuthead then so am I. Thanks for the update.
Who wouldn't worry...? You seem to take things in stride and live up to your name. It can't be easy or without worry. I am glad that you had a Happy Thanksgiving and many more to come.
Love and Peace, Carolyn
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11-27-2006, 03:21 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Joy,
What wonderful news! Happy to hear your scans went well.
Relax a bit and rejoice! God is good and is answering your
prayers.
Hugs,
Jean
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11-27-2006, 03:38 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 476
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Joy to the world, particularly to Joy.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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11-27-2006, 06:15 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Hi Joy,
You brought us joy with your good news. I wish you continue with good news all the way. You deserve it beautiful!
Love and light,
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11-27-2006, 06:24 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Hi Joy,
What awesome news! I am so happy you have a treatment that is working keep up the good work! All my best.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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11-27-2006, 07:51 PM
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#8
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Good old Navelbine ---
--- for some of us it is just what we needed to put those mets in their place.
I am overJOYED that it is a good drug for you as well. And the clean brain MRI is just frosting on the cake - so eat hearty!
And just be glad there is good movement in the right direction. You WILL get to NED again, I am sure.
__________________
"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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11-27-2006, 08:55 PM
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#9
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Congrats. If you posted before it doesn't matter because we can't remember either. Ha, Ha. I don't think you have. Don't know the answers to your questions. It seems that the researchers have been making such leaps lately w/ BC treatment. I'm just hoping we can all keep this thing at bay until they have a cure. BB
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11-27-2006, 09:02 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Woo hoo!
Great news - try to enJOY that and save the worries for next year!
chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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11-27-2006, 09:13 PM
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#11
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Add me to the list of nut heads. In fact, I joking refer myself as "the crazy brain lady". This because I am always bugging my Oncologist about scanning me for brain mets, I worry about them too. I just had my regular 3 month PET/CT scans and now the real worrying begins, until I get the news. Here's hoping for good holidays for us all and many more to come..sherryg683
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11-28-2006, 10:27 AM
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#12
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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perspective
THANK YOU ALL for the healthy perspectives. You lifted my spirits and made me laugh-what a gift you all are!
Sherry, I'm thinking happy scans!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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11-28-2006, 10:59 AM
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#13
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Joy, that's wonderful news, so happy to hear it! We've used Navelbine successfully off and on for over 5 years to keep my lymph node mets under control. Although I did start progressing again while on Navelbine this spring and had to move on to Xeloda, I was very surprised at the duration of Navelbine's effectiveness in my case, and think it's got a great future in combo with Herceptin. Here's hoping it continues to do the trick for you and here's to a long and happy relationship between the three of you 
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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11-28-2006, 02:10 PM
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#14
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Senior Member
Join Date: Aug 2006
Location: PA
Posts: 188
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Sounds like jumping for Joy is in order ! Really glad that you had a good holiday and some good news too !!
Thinking of you
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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11-28-2006, 02:59 PM
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#15
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Senior Member
Join Date: Jan 2006
Location: ALEXANDRIA, VA
Posts: 40
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Hi Joy, Just wanted to let you know how well Navelbine & Hercp has worked for me .... I started that reg in 6/05 and stayed on it until 9/7/06 .... stayed "ned" while on it .... stopped the navelbine in Sept; stayed on hercp only but my most recent scan revealed a highly susp. lymph node in right pec area of chest .... I am still on hercp only till I get another scan on 12/14 ..... it has been great to be off chemo for a while ..... If I need to go back on chemo I am going to see if I can go back on navelbine ..... have never had any brain mets only one spot on my liver at inital dx ... as for " chemo brain " that is something I definitely have issues with ... I try hard at work so it is not so evident ...checking and rechecking my work.. but I know it is all in God's Hands .... HE will take care of me.... Navelbine did not have a lot of side effects which is a real plus ....
Take care and have good days ahead ....
Debbie
__________________
dx stage 4 ... 11/04
3.2 cm mass breast & liver mets..
her2 +++ ; er- ; pr -;
11/04 treated with hercp, taxol & carboplatin - every 3 wks
3/05 ned - stopped chemo; hercp only
5/05 reoccurence left breast
6/05 added navelbiene w/ hercp every other wk
7/05 mascetomy
12/05 ned ; same regiment- every 3 wks
3/06 & 7/06 ned
9/06 stopped navelbiene.. hercp only.. every 3 wks;
10/06 pet scan shows positive lymph node in pec
12/06 PET no change;
4/07 scan showed 4 abnormal nodes in right pec area ... these have increased in activity since last scan... will start back on weekly navelbeine & hercp
7/07 PET done ..this time it showed new nodules in both right & left lung area as well as increased activity in pec area..
8/07 started Taxol & Carboplatin with Hercp every 3 wks
10/07 PET done ...Great Report ... NED ....
11/07 continue with Hercp every 3 wks & do Taxol & Carboplatin every 6 wks
4/09 still on same regiment; 1 positive node in left lung and right pec area
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11-28-2006, 03:53 PM
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#16
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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Dear Joy,
That is great news!! Thanks for sharing.
Love,
Karen
__________________
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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11-28-2006, 07:56 PM
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#17
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Great news Joy. Now please try and relax and enjoy yourself. You certainly deserve it.
__________________
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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11-28-2006, 09:22 PM
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#18
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am really excited to hear your news. Good scans are always great news. By the way, I must be a nuthead, too.
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11-29-2006, 07:19 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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From one nuthead to another.............
I am so pleased to read your great achievement.
Take care
Christine
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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