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06-21-2010, 12:33 PM
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#21
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Another Twist in the cancer
Sheila,
When I was in Chicago I heard the report on the news about the Tornado that destroyed a lot of homes and I'm sorry to hear that your son's home was devastated. Yes, we never know what's going to happen one day until the next.
I too have an elevated hemidiaphragm, which occurred after my second lung surgery. I'm not sure whether it's from gravity or a damaged nerve, or both. I've had two lung resections, so there's space for the diaphragm to move up since some of my lung is missing. But the condition can also be caused by cutting certain thoracic nerves, like the phrenic nerve (I think), and I have a 10-inch scar down my back on the left side starting at my shoulder blade, from the thoracic surgery. I also had a collapsed lung. They usually bounce back, and I hope yours does soon.
Sending good vibes that you'll be feeling better soon.
xoxo
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
Last edited by Joan M; 06-21-2010 at 12:36 PM..
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06-21-2010, 03:25 PM
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#22
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Another Twist in the cancer
Dear Sheila,
I do hope that your breathing will return to normal very soon. You have gone through so much. It's time for a nice long break!
I am sorry that your son's home was destroyed in the tornado. That is terrible. So happy that he and his family are physically okay though. I hope they can rebuild and make it a happy home again very soon.
Hugs and Prayers,
Lexi
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06-21-2010, 06:10 PM
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#23
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Another Twist in the cancer
Dear Sheila,
So sad to hear these horrible news... so sorry.
Love,
Adriana
__________________
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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07-06-2010, 07:16 PM
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#24
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Re: Another Twist in the cancer
sheila, you continue to be in my thoughts and prayers. havent been here for awhile. recovering fro a total shoulder replacement and typing is limited to my left non dominant hand. very long recovery ahead for me...6-12 months.
__________________
~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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07-06-2010, 08:37 PM
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#25
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Another Twist in the cancer
Dear Sheila,
I just saw this post - so sorry about the house, and about your breathing troubles. I hope you feel better soon.
And Rina, hope your recovery goes well too.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
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.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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07-06-2010, 08:46 PM
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#26
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Another Twist in the cancer
I hope things are better for you and your family Sheila.
Take care.
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07-06-2010, 11:36 PM
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#27
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Another Twist in the cancer
Shelia, Not a day goes by I don't think of you. I sure hope your feeling better. Your one tough cookie that's for sure. I'll keep you in my thoughts and prayers.
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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07-07-2010, 06:03 AM
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#28
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Another Twist in the cancer
Sheila, I'm also thinking about you and hope that you are breathing easier. Also thinking about your family.
Barb A.
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07-07-2010, 12:24 PM
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#29
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Another Twist in the cancer
Thank you all for your thoughts and prayers...this has taken a toll but I am still trying to increase my lung capacity and inflate the lower lobe...I am back to walking, at a slower pace, but up to 1 mile a day...a long way from a month or 2 ago! The heat makes it difficult, so its all about timing. I completed my first cycle of metronomic chemo, Cytoxan and Methotrexateand do notice some shrinkage of the axillary nodes and neck nodes....I am always a quick responder at the beginning. I am hoping the scans will show the mediastinal nodes and the ones around the pulmonary artery have shrunk! All in hoping that this will keep disease progression at bay until i can get TDM-1....
This has truly been a trying year with my parents, myself and my son....his house was demolished last week, so his wife and him are designing their "new" house. He is off work so he has plenty of time to worry about the what ifs....I have tried to tell him many times, its not easy, but you deal with the hand you are dealt, try to make the best of it, and remain positive.....hard to do, but we have all been there, some of us more than once.
Hoping the next half of the year is more peaceful....you are all in my thoughts and prayers!
__________________
"Be kinder than necessary, for everyone you meet 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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07-07-2010, 12:54 PM
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#30
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Another Twist in the cancer
Things have been so rough for you and your family of late Sheila and I'm so sorry about that.
You deserve a break and I hope it comes very soon in the form of good news re your health and recovery. Thanks for updating us as I was wondering how you were. (((hugs)))
__________________
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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07-07-2010, 01:26 PM
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#31
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Senior Member
Join Date: Nov 2006
Location: South Carolina
Posts: 183
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Re: Another Twist in the cancer
OH Sheila,
I hope you are feeling a lot better these days. You are up to a mile a day!!! That is better than most, no small feat if you ask me!!
I know your son is devastated about their beautiful home, how hard that must be to watch your life being demolished before your very eyes. But how proud they will feel once they get into their new home and know that they designed it!! Not many people get the opportunity to design your own home!! A home made just for them!!
I hope things have started turning around for the better for you and your family.
__________________
Anita
er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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07-07-2010, 02:15 PM
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#32
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Senior Member
Join Date: Oct 2005
Posts: 215
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Re: Another Twist in the cancer
Well Shiela , I can certainly relate to getting kicked in the a** a few times. Between my cancer, hubbies bypass surgeries and now waiting for my son to get a kidney and pancreas transplant it seems like it never ends. But as my hubbie say's you kick ass and take names later. Having been thru so much , you learn to tough it out with the grace of God at youre side, Jeanette
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07-07-2010, 05:24 PM
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#33
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Another Twist in the cancer
Sheila, I too think about you daily - actually multiple times daily. For sure this has been a heck of a year, and I am humbled by your strength.
Hang in there my friend.
__________________
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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07-08-2010, 02:15 AM
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#34
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Another Twist in the cancer
Hi Sheila
I to feel humbled when I read all you and your family have been through.
Your courage is astounding and your compassion for others so very special.
Ellie
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07-08-2010, 04:51 AM
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#35
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Another Twist in the cancer
Sheila - You are also in my thoughts daily, praying that your breathing continues to improve and you'll feel better. My heart goes out to all of you and all the hard things happening in your family. Your strength and stamina are amazing. Pam
__________________
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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07-09-2010, 05:16 PM
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#36
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Re: Another Twist in the cancer
thanks caya. i am keeeping up the pma during the long road of recovery. chemo and radiation were easy compared to this.
__________________
~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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