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10-18-2010, 07:41 PM
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#1
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Member
Join Date: Oct 2010
Posts: 7
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Er-/pr-/her2+?
Anyone out there with a similar diagnosis to that of my wife? If so, could you share your regiment/treatment? Thank you in advance.
__________________
on behalf of my wife. DOB: 11/1960
Diagnosed IDC on 7/27/10 in right breast (plus 3 areas of DCIS)
ER-/PR-/HER2+++
1.6 CM tumor size, 1/4 nodes positive
CAT/MRI/Bone all negative for mets (august 2010)
Unilateral mastectomy/immediate DIEP reconstruction on 10/15/10
Started 6 rounds of TCH on 12/9/10, continuing with herceptin for a year
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10-18-2010, 08:06 PM
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#2
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Member
Join Date: May 2010
Posts: 6
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Re: Er-/pr-/her2+?
I am er-pr-her2+++. DCIS. Nodes negative. No mets. I am almost finished with my treatments. I had a partial masectomy, needed a second surgery to clear margins. Had 6 rounds of Taxotere, carboplatin, along with Herceptin. Herceptin was given with the chemo every three weeks, but herceptin will continue for one year total. After chemo, had radiation for 6 weeks. I only have two herceptin left and will get my port removed one week later.
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10-18-2010, 08:32 PM
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#3
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Senior Member
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
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Re: Er-/pr-/her2+?
Hi imatthew,
My diagnosis is similar in that it is ER/PR- HER2+ (see my signature line for detail)--I had ILC-lobular versus ductal--
I recently read that there are 7 types of tumors and 10 subtypes--honestly, I don't know how many combination's that would be--but it has to be several hundred.
Good Luck to your wife and to you.
__________________
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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10-19-2010, 01:51 PM
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#4
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Er-/pr-/her2+?
You are a special guy to be your wife's advocate. Everything can be quite confusing when you are first diagnosed.
The first thing that needs to happen is the staging of your wife's disease. The treatment protocol varies by the severity of her disease. Since her sentinel node was positive, I believe she will be at least stage 2.
I am also ER-/PR-/HER2 positive. But it was over 6 years ago when I was first diagnosed. So what they used on me back then may not be what they will recommend for your wife. They know now that chemo works better on ER-/PR- than it does on ER+/PR+ which is a positive for your wife. But they still have no idea what feeds ER-/PR- tumors and have no drugs other than chemo to treat that aspect of our tumor. Fortunately, your wife is HER2 positive. Knowledge of HER2 breast cancer has advanced a lot in the past six year and there are many new drugs on the market and in clinical trial to target HER2.
One thing that I do recommend to anyone facing chemo is to have a port installed unless you have very good veins. I wish someone would have told me to do this. It makes receiving the chemo so much easier. Talk to your wife's doctor about it before she gets started and see what he/she thinks. It is a simple outpatient procedure to put it in and then take it out when treatment is completed.
Sending my best to your wife. She has joined a club she never wanted to be in. But let her know she will be OK. This is just a speed bump in life.
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10-19-2010, 03:55 PM
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#5
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Er-/pr-/her2+?
Hormone negative here. You can see my treatment information below along with a clinical trial I participated in. Best of luck to you and your wife!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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10-19-2010, 07:43 PM
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#6
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Senior Member
Join Date: Aug 2010
Location: connecticut
Posts: 41
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Re: Er-/pr-/her2+?
Hi,
Sorry you had to join this club. I am er-pr negative strongly her2 positive. My dr found my sentinal positive after surgery but did not give me any further info untill pathology 2 weeks later. Did you ask surgean aprox # of how many they removed?
1 sentinal node is probley a stge 2a
anything attached to the chest wall may be a stge 2b with 1 node
anything 4+ nodes is stage 3a w/no mets (That is me with just 4 nodes)
when the mamory or chest nodes are involved it could be 3a or 3c
There is somewhere on this website that explains or you can google breast cancer staging.
The hardest part is not knowing and waiting for results just take one day at a time and know she will be ok. My doctor tells me I am 85% curable and in 5 years he only had 1 reoccurance since herceptine! Yes have your wife get a port it is such a blessing..i actually am happy to have it when i go to treatment..and ask for emla cream.Standard w/her2+ is 1 year of herceptine either immediately w/chemo or after 4 rounds of AC. Dont get to down..it is all doable they have great meds today. i just completed my chemo today!!! I chased a 1 year old all day throughout and kept activies rollin all summer w/my 6 year old!
im here for you and so is everyoyher lovely later on this board. Please Pm me anytime w/questions i would love to help if i can.
Sending hugs to you & your wife
Joletta
__________________
dx- march 2010 age 35 stage 3a 4 of 9 pos. nodes
idc 2.2 ininvasive 7cm of dcis er/pr- her2+
april 15 2010 bilateral masectomy w/ tissue expanders
may 4 2010 port import
may 6 2010 clean ct scan & bone scan
may 11 2010 start 4 A/C (finish aug 3 2010)
aug 17 2010 start weekly herceptine & taxol 12xs (end date of oct 19 2010)
nov-dec 2010 30 radation
(plan permanent implants for feb or mar 2011)
continue on herceptine till aug 2011
Love & prayers to everyone
Joletta
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10-19-2010, 08:32 PM
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#7
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Er-/pr-/her2+?
Hema is ER-PE- her2+++ .
She was started on Chemo,six courses at intervals of 3 weeks. Herceptin after the first chemo (from the 2nd) totally 9 doses of herecptin.All the time Zylotec added.Her PET scan after the 6th Hceptin was that she was responding to the treatment
BTW her next appointment is tomorrow and the Onc has indicated that he will be switichin over to Tykerb'
Wi every one all the best
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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10-19-2010, 11:01 PM
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#8
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Senior Member
Join Date: Nov 2006
Posts: 35
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Re: Er-/pr-/her2+?
Hi there - as you can see from my signature I'm also her2+ and er/pr-. I'm over 8 years out and doing great - good luck to you and your wife - there is a lot of support from this site and treatment options are ever-expanding.
-Marianne
__________________
4/2002 Diagnosed @ age 47: 1.8cm, 1+ve node (of 27)
Her2+++, ER-/PR-; 9/9 on Bloom-Rich. scale. "Poor prognosis" written after every result on my path. report!
ACx4, Taxolx4, finished 10/2002 and then 37 rads.
2004 - Clinical trial (vaccine) @ UW, Seattle
2007 - clinical trial Tykerb (on placebo?)
So far, so good!
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10-20-2010, 09:36 AM
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#9
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Er-/pr-/her2+?
I was dx with er/pr neg Her2 pos BC May 05.
I was staged at IIIC due t0 many node positive 12 out ot 14
( all axilla- underarm)
I had all neagative scans for mets.
I did immediate RMM with axilla dissection.
then dose dense Adria & Cytoxan x 4
Then Taxotere with herceptin every 3 weeks.
When I finished taxotere ( but stayed on herceptin ) I had radiation tx daily X 35 days.
After 6 months of completing rad tx. I did a prophylactive Left mastectomy and bilateral reconstruction.
Alls' well and no evidence of any disease.
__________________
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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10-20-2010, 12:34 PM
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#10
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Er-/pr-/her2+?
Hi,
I am er/pr negative and her2+++. Was dx'd 14 years ago before adjuvent herceptin for node negative breast cancer was "invented". I am pretty sure they will recommend some chemo and some herceptin. We'll get her/you thru it all! Sorry you have to be here, but great place for HER2 INFO, BRAINY feedback, SUPPORT and also COMEDY.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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10-20-2010, 03:57 PM
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#11
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Senior Member
Join Date: Oct 2010
Posts: 123
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Re: Er-/pr-/her2+?
socalgal,what I can tell when reading your sig is that you had 3 consec. re-occurances in 04' 05' & 06' is that what you are saying? omg that had to be stressfull,bless your heart<3
__________________
found susp.lump Feb 2009
DX Feb 2009 ...Her2+ stage IIa ER/PR- grade 3
partial mast. Right breast,clear margins
chemo (2) carboplatin & Taxotere
could not finish chemo (hospitalized because of infection)
37 rounds radiation
Herceptin (1 yr.)
No clinical trials
Jan.2011 BRAC 1/BRAC 2 Neg
Aug.2011 clear bone/catscan NED
Apr.2012 clear digital mammo
& ultra sound of breasts
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12-10-2010, 08:27 PM
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#12
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Member
Join Date: Oct 2010
Posts: 7
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Re: Er-/pr-/her2+?
thank you for all the responses. Yesterday my wife started 6 rounds of TCH, with herceptin continuing every 3 weeks for a year. She gets a neulasta shot the day after each treatment.
After the treatment we went out to dinner, she hasn't really felt any side effects except being wired from the dexomethasone. She's out tonight with the ladies, so it's so far so good. I assume the fatigue will hit pretty soon.
Good luck to all of you with your treatments.
__________________
on behalf of my wife. DOB: 11/1960
Diagnosed IDC on 7/27/10 in right breast (plus 3 areas of DCIS)
ER-/PR-/HER2+++
1.6 CM tumor size, 1/4 nodes positive
CAT/MRI/Bone all negative for mets (august 2010)
Unilateral mastectomy/immediate DIEP reconstruction on 10/15/10
Started 6 rounds of TCH on 12/9/10, continuing with herceptin for a year
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12-11-2010, 01:33 AM
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#13
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Junior Member
Join Date: Dec 2010
Posts: 2
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Re: Er-/pr-/her2+?
Hi Everyone, I just joined today, great to be on this informative site. I'm Her2 pos ER- and very weakly PR+ (5%) so I think I fit here. Am on TCH, got 1 more to go. It's knocking me around, just had to have a blood transfusion after Tx #4 so I'm hoping I'll be OK to go into the last one on 29th Dec.
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07-10-2012, 02:23 PM
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#15
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Senior Member
Join Date: Jan 2010
Location: Wisconsin
Posts: 80
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Re: Er-/pr-/her2+?
Mine is same. six rounds of Taxol and Carboplatin along with Herceptin for one year and 35 sessions of Radiation. I did not have any positive nodes however. Your wifes treatment is very consistent with her diagnosis. GOOD LUCK to you.
__________________
Sandra from WI
Stage 1, Tumor 1.4 cm, Grade 3, ER-/PR-/HER2+++
Poorly Differentiated IDC with comedo type necrosis with DCIS/ALH :(
Mammogram: 11/12/09
Call Back Mammo: 11/17/09
Biopsy: 11/25/09
Diagnosis Call: 12/2/09
Partial MX: 12/16/09. 3 LN clean.
6 Cycles Chemo (TCH) Jan-April/10; Herceptin all of 2010; 33 Rads complete 7/10. Herceptin done 12/10.
FOLLOW UPS:
Bil mammo, and Breast MRI 12/10 - CLEAN! (after a second lump was biopsied and BENIGN - showed giant cell reaction?).
Bil mammo 6/11 - CLEAN!
Left mammo 12/11 - CLEAN!
PET/CT scan 4/6/12 - CLEAN!
Bil mammo 8/12 - CLEAN!
November 2012 - Gallbladder Removed.
Bil MRI 2/13 - CLEAN!
http://www.caringbridge.org/visit/sandragreen
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07-11-2012, 03:11 AM
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#16
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Er-/pr-/her2+?
Sandra, this is an old thread which a spammer has infiltrated!
Ellie
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Re: Er-/pr-/her2+?
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