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View Poll Results: ER-/PR- HER2 staging poll
I am stage 0 or 1 ER-/PR- HER2+ and originally diagnosed as stage 1 with negative lymph nodes 34 18.78%
I am stage 0 or 1 ER-/PR- HER2+ and originally diagnosed as stage 1 with positive lymph nodes 3 1.66%
I am stage 2 or 3 ER-/PR- HER2+ and originally diagnosed as stage 2 or 3 with negative lymph nodes 25 13.81%
I am stage 2 or 3 ER-/PR- HER2+ and originally diagnosed as stage 2 or 3 with positive lymph nodes 63 34.81%
I am stage 4 ER-/PR- HER2+ and was originally diagnosed as stage 4 25 13.81%
I am now stage 2 or 3 ER-/PR- HER2+ and was originally diagnosed at a lower stage 7 3.87%
I am now stage 4 ER-/PR- HER2+ and was originally diagnosed at a lower stage 25 13.81%
My cancer metastasized less than two years from original diagnosis 14 7.73%
My cancer metastasized two years to four years from original diagnosis 5 2.76%
My cancer metastasized in greater than four years from original diagnosis 6 3.31%
Multiple Choice Poll. Voters: 181. You may not vote on this poll

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Old 12-21-2010, 03:17 PM   #21
Ursula
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Re: ER-/PR- HER2 staging poll

How do you define weakly positive, where is the borderline in general? My receptors were ER 15% and PR 15,5% and still didn't receive any antiestrogen treatment. As far as I know, existence of PR-receptors means good for the prognosis, but what is enough? No-one can predict. I had Stage IIIB but I'm still dancing with NED!
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Kind Regards,

Ursula

Diagnosed 05/07 at age 42
Ductal Invasive Carsinoma Gr III, Stage IIIB:
Primary tumor 35 mm, secondary 21 mm
Node positive 13/23
Er/Pr negative (15 % /15 %)
Her 2+++
Ki-67 80 %
Mastectomy and node evacuation (rt) 05/07
3 x Taxotere + Herceptin (9 weeks)
3 x CEF
6 x Neulasta during chemos
23 x rads
Celebra for joint and PMS pain
NED
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Old 12-21-2010, 06:39 PM   #22
DianneS
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Re: ER-/PR- HER2 staging poll

Ursula,

I cut and pasted this from another thread here:

A copy from another post of mine applies here too as a positive note:

These are quotes from the esteemed E. Perez, MD:

''Unlike ER-positive breast cancer, in which events are strung out over the course of 10 to 15 years, in HER2-positive breast cancer most of the events occur in the first five years and a lot of them occur in the first couple of years. That is part of the reason why, in each of these studies, we saw a dramatic benefit early on, even in the first year (Perez 2005b; Piccart-Gebhart 2005; Romond 2005)"

I guess Perez is basing her comments on retrospective studies which go back after the event and analyze data. According to Perez, survival after five years for her2+, er-, pr- is a milestone, not a guaranteed cure, but a certainly a positive milestone.

Of course, we'll get the full story , and perhaps a more accurate picture, of natural history from prospective studies like the HERA where data is analyzed as it is made.



Dianne
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Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 01-01-2011, 02:17 PM   #23
caya
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Re: ER-/PR- HER2 staging poll

DianneS

I am in Toronto, Ontario and I got my ER/PR in % - ER 90%, PR 50%. This was 4 years ago.

all the best
caya
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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
10 Years NED!!
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Old 09-13-2011, 05:16 AM   #24
norkdo
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Re: ER-/PR- HER2 staging poll

astrid...which resort did u take your photo in? It looks like a good place for me to fantasize about going to, the day after I finish all my treatment!
nora
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 11-22-2013, 11:58 AM   #25
TracyD
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Re: ER-/PR- HER2 staging poll

Hi All, I think I can answer Nancy L's question about how you can be originally diagnosed at Stage 1 and later be diagnosed at Stage 3. Based on three biopsies I was originally diagnosed as Stage 1mic. However, after lumpectomy was diagnosed as Stage III with 5 out of 6 lymph nodes positive (done via sentinel node biopsy). Currently doing chemo first, then bi-lateral masectomy, followed by radiation.
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Old 11-23-2013, 12:28 AM   #26
conomyself
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Re: ER-/PR- HER2 staging poll

Hi Astrid, sorry I didn't see the ER-/PR-. I voted, but I am triple positive -- maybe you can remove my vote? I selected the 5th option, diagnosed at stage 4.

Rachael
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7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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Old 12-11-2013, 02:09 PM   #27
Andrea Barnett Budin
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Re: ER-/PR- HER2 staging poll

Hi. Though I metastasized 2-4 yrs after orig dx -- actually 3 yrs -- I think it's important to add that I did not have benefit of Herceptin in 1995 (H being in clinical trials and not even testing for the HER2 gene was done then).

In August of 1998, I asked to be tested (H still in clinical trials) BUT -- fast tracked by the FDA September 28 of 1998 -- for metastatic bc. I FINALLY LUCKED OUT...

Love and Light,
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 12-18-2013, 06:50 AM   #28
Claudia
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Re: ER-/PR- HER2 staging poll

Hi, I am new here
I am now stage 4 ER-/PR- HER2+ and was originally diagnosed at a lower stage
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Claudia
DX:08/2013IDC Stg.IIb,ER#,PR-,HER2+
12/2013 St.IV
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Old 02-23-2015, 08:25 PM   #29
Pat94
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Re: ER-/PR- HER2 staging poll

Nancy L, I was originally Stage 1 (& 0). A year later I had a local recurrence and was classified as Stage 3. Originally no lymph node involvement. Because of the number of positive nodes I am 3C. No distant mets at this time. The fact the recurrence was local and not distant allowed for the Stage 3 classification instead of Stage 4.
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Old 02-24-2015, 12:13 PM   #30
Dakini52
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Re: ER-/PR- HER2 staging poll

ER-/PR- HER2+. Original diagnosis stage IIB. Local recurrence in 2010. Currently NED. On Herceptin since recurrence.
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 02-25-2015, 12:32 AM   #31
JessicaV
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Re: ER-/PR- HER2 staging poll

Hi Elaine M, my oncologist gave a talk recently in which she said she had done a study (BCRC 107) Does BC cell change when it recurs as a metastasess, looking at ER+/-, PgR+/-, and HER2+/- factors in the primary tumor compared with metasates. Theyfound there is concordance in 99% of cancers. She said there is some confusion in that people with HER2+ were sometimes originally told they were HER2postive on a score of 1 or 2, or that they were ER+ when they were too low to really be positive. And then new primaries or concurrent primaries may be different cancers and may have diff ER+/-, PgR+/-, and HER2+/- . So this should not be such a big issue overall.
Cheers
Jessica
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1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.

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Old 02-25-2015, 12:26 PM   #32
Dakini52
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Re: ER-/PR- HER2 staging poll

I had a local recurrence to my chest wall in 2010 and was treated with Herceptin surgery and radiation. I was originally Stage IIb and my recurrence didn't affect that original staging.

This link might be helpful: http://ww5.komen.org/BreastCancer/Me...roduction.html
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 02-25-2015, 04:41 PM   #33
broccoli
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Re: ER-/PR- HER2 staging poll

Hi Debbie, was the recurrence detected by a mammogram or by another type of scan?

Just curious.

Thanks! Laura
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2012-Feb-29 D-Day: IDC ER-/PR- HER2+++ Grade 3, Stage 3 - several biopsy proven positive nodes
2012-Mar - July: Neoadjuvant FEC-D + Herceptin (6 rounds)
2012-Apr: DVT in arm that received chemo - put on LMW Heparin
2012-Apr: Port installed
2012-Sep-7: Lumpectomy + ALND - pCR with residual DCIS
2012-Oct: Switched from LMW Heparin to Warfarin
2012-Oct-Nov: 30 days of rads
2013-Jan: Entered Adjuvant Metformin trial (Metformin or placebo for 5 years)
2013-Jan: Switched from Warfarin to Xarelto
2013-Mar: First signs of lymphedema
2013-May-16: Last Herceptin (17 doses in total)
2013-Jun: Port removed and anticoagulants stopped
2014-Mar: Lymphedema worsened and became unresponsive to treatment
2015-Apr: Started PENTOCLO protocol to attempt to improve radiation fibrosis
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Old 02-25-2015, 05:26 PM   #34
Dakini52
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Re: ER-/PR- HER2 staging poll

The recurrence was diagnosed during a CT scan which I was having every 6 months. I had no symptoms and my bloodwork was normal.
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 12-21-2016, 11:09 AM   #35
moma sheila 1962
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Re: ER-/PR- HER2 staging poll

Hello. So glad for this site. I need to see what others are feeling and dealing with. I was diagnosed in March of this year. I have her2 positive, in 1 lymph node stage 3 bc of my tumor size. It has spread to my lower back as well. I'm on herceptin every 3 weeks, on arimidex daily, xgeva every 4 weeks, along with calcium tabs 2x a day. My blood work is now in normal range. It was better the 2nd time around than the 1st. My tumor has shrank in 6 months from 8cm to 2x2 cm. My oncologist sees no need for any surgery. He plans in keeping up what we're doing now since its working so well. I'd appreciate any input. Thanks. God bless you all.
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