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05-02-2007, 01:08 PM
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#1
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Survival without Herceptin
Hi All,
I've been wondering how many of you never got Herceptin. Either because your doctor didn't want you to try it, or because it was unavailable to you for other reasons.
I was diagnosed in Jan. 2004 and at the time, Herceptin wasn't prescribed in the adjuvant context. I didn't get chemo either, as my tumor was tiny (o.6 cm) and I was ER+.
I did get Zoladex shots, to shut down my ovaries and Arimidex.
So who survived without Herceptin? And how are you now?
Thanks
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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05-02-2007, 03:21 PM
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#2
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Senior Member
Join Date: Nov 2006
Posts: 35
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Hi - I'm 5 years out from diagnosis w/out Herceptin
Hi - I was diagnosed 4/2002, 1.8cm, 1+ve node, grade 3, ER-ve/PR-ve, Her2+++
I chose not to take Herceptin; did AC x4, Taxolx4, 37 rads. Did the UW vaccine trial back in 2004. Now I'm on the TEACH trial for Tykerb alone. After reading about all the side effects others taking Tykerb are getting, I'm assuming I'm on the placebo! - won't find out til the end of the trial in Feb. 2008.
I'm feeling fine.
Marianne in WA
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05-02-2007, 03:33 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 476
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My onc did not allow me to have Herceptin without chemo, so I didn't have neither. As you see below, I am doing fine so far. Of course, the next 6 to 12 months will be the critical period. If I am NED for another year, I consider myself in good "cured" class, like you. The chemo and Herceptin add the probablity of disease free by 5 to 10%, but their negative effects are troublesome in many cases.
__________________
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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05-02-2007, 04:55 PM
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#4
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Senior Member
Join Date: Sep 2005
Posts: 161
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No Herceptin for me either.
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%
Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.
Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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05-02-2007, 06:05 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: Beavercreek, Ohio
Posts: 67
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I was diagnosed in April 2003 and received 4 rounds of A/C and 4 rounds of Taxol. Bi-lateral mast. NED so far. I just signed consent papers to begin the TEACH trial. We'll see if I qualify over the next few days.
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05-02-2007, 08:10 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Maine
Posts: 97
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I was diag. July 2002 and finished chemo in Jan 2003. I never received herceptin either. Like Marianne, I am currently participating in the TEACH (Tykerb) trial.
Pat
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05-03-2007, 12:48 AM
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#7
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Member
Join Date: Oct 2006
Posts: 15
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No Herceptin or chemo
I was diagnosd in June 04 at age 52. Her2 testing was not the protocol in Australia then. My tumour was 0.8mm ER 10% PR -, 7/9 on Bloom Richardson. Only rads recommended + tamoxifin. Switched to Arimidex in Nov last yr and was tested for Her2 on IHC & Cish. Results IHC Her2+++ Cish 8.0. Onc said I should have been offered chemo but not necessarily Herceptin because of the small size of the tumour and the possible side effects.
Coming up to 3 yrs NED & like the rest of you hoping to continue this way.
Emily
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05-03-2007, 06:23 AM
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#8
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Senior Member
Join Date: Mar 2006
Posts: 306
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Well...
In Jan. 2000, I was dx'd with Stage IIIb er+ pr- but not tested for Her2 status . Went to Mexico for all, as I had no ins. Only recvd 4 rnds of A/C. No rads because no more money.
Mets dx July 2002. Mediastinal node/s, surgical biopsy and was then found to be Her2+++, also spot on lung/pelvis. Tx was Navelbine/Herceptin for just 4 rnds when scans showed NED in body. I then stopped tx. Have not had any further Herceptin and have remained NED in body.
Brain mets in Sept. 2002 with two recurrances, including present.
So, I HAVE had Herceptin, but only four infusions 4 1/2 yrs ago, none at first dx 7+ yrs ago...
patty
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05-03-2007, 02:37 PM
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#9
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Senior Member
Join Date: May 2006
Posts: 221
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Hi, good question. I was diagnosed in 2001, details in signature below. I desperately wanted Herceptin, which at that time was available for adjuvant use only in trials unless one was independently wealthy. I enrolled in NSABP B-31's adjuvant Herceptin trial and lost the toss - was randomized to the control (no Herceptin) arm. It was a hard blow at the time but here I am, six years later and NED.
Debbie L.
__________________
3/01 ~ Age 49, occult primary announced by large axillary node found by my husband. Multiple CBE's, mammogram, U/S could not find anything in the breast. Axillary node biopsy - pathology said + for "mets above diaphragm, probably breast".
4/01 ~ Bilateral mastectomies (LMRM, R simple) - 1.2cm IDC was found at pathology.
5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP B-31's adjuvant Herceptin trial (no Herceptin): A/C x 4 and Taxol x 4 q3weeks, then rads. Arimidex for two years, stopped after second patholgy opinion.
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05-03-2007, 02:43 PM
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#10
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Senior Member
Join Date: Jan 2007
Posts: 27
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No A/C or herceptin for me. I'm at the beginning of my wait and see period. I'll save the big guns in case I need them later. Carol H., Fl.
__________________
 Carol H., Florida
Right Breast 11-28-06
Lumpectomy
Infiltrating Carcinoma
Stage 1
Grade 11
1.5 cm
Sentinel Lymph Node Neg.
ER-
PR-
Her2+
Fish 2.5 Amplied
KI-67 20%
Radiation= 6 weeks
Refused Chemo & Herceptin
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05-03-2007, 08:16 PM
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#11
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Member
Join Date: Mar 2006
Posts: 8
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As you can see by my signature. I never received Herceptin and am NED. Found out today I need Arthoscopic hip surgery to delay hip replacement and an angioplasty for blockages of my heart. May be due to the Taxotere or Genetic. But I am still NED for cancer. That's good news! To me all is well.
__________________
Diagnosed 10/2003 Found lump myself 1 week after having had a 6 month followup mammogram for biopsy on left breast. Nothing abnormal on mammo.
Grade III 2.2cm
Stage 2 Invasive ductal carcinoma Right breast
Grade III 2.2 cm
No lymph node involvement
ER+ PR-
HER2+++
Lumpectomy 11/03
Clinical study BCIRG006 Control Arm no Herceptin
A/C x4
Taxotere X4
Rads x36
Arimidex
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05-04-2007, 12:29 AM
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#12
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Senior Member
Join Date: Apr 2006
Posts: 148
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No chemo or herceptin for me, either. It seems there are quite a few of us in this particular boat.
Please read my signature.
Mcgle
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05-04-2007, 09:23 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Lost Regiment of HER2s
Count me in -- no Herceptin.
Dx 2002 1.6 cm IDC plus some DCIS
Stage T1c, no LVI
ER+/PR+, HER2+++
(Oncotype Dx not yet available back then)
CAF x 6, IMRT rads, tamoxifen x 1 3/4 yr
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05-08-2008, 08:06 AM
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#14
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Member
Join Date: May 2008
Posts: 17
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This is an older thread that I was glad to find. Any others that can add to it?
__________________
~~~~~
Pam
~~~~
DCIS 1.5 cm Grade3 ER/PR-
IDC-1.2mm
stage I , grade I
ER+ 18%
PR -
Her2 Positive (FISH)
Node Negative
Lumpectomy SNB-4-1-08
BL Mastectomy 4-22-08
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05-08-2008, 10:43 AM
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#15
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Senior Member
Join Date: Nov 2006
Posts: 35
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I'm still here - now 6 years no recurrence
Hi - yes, it would be good to hear from all the other no Herceptin/no recurrence people who replied to this thread las year. I'm sill doing well.
Marianne in WA.
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05-08-2008, 01:51 PM
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#16
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Senior Member
Join Date: Mar 2008
Posts: 141
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Thank you everyone for responding. It makes me feel better about what all of my oncologists recommeded as my treatment plan.
Liz
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05-08-2008, 01:52 PM
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#17
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Guest
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Survival without Herceptin
No chemo- no herceptin , I'm 18 months out now and still NEDS. But believe me I think of it returning all the time. I know all of you understand that feeling. I visit this site everyday, usually lurking in the background, not sure what to say, just wanting to be with my sisters.
I would like to share a poem with you written by Katherine Von Ahnen ( I have a feeling she has cancer too)
Faith
I'd like to find a quiet place
Where I could talk to God,
To ask if I've been right or wrong
And see him frown or nod.
There are so many things of late
I do the best that I can do
In my own stumbling way,
And yet...I'm never really sure
Which path I ought to trod
So I'll just do the best I can,
And leave the rest to God.
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05-08-2008, 02:13 PM
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#18
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I was diagnosed in 2002...small tumor 7mm, node neg, ER PR neg. .... No chemo, No Herceptin, Mets to the Supraclavicular nodes 1 1/2 yrs later...been in treatment ever since....and from the looks of it, always will be....being in treatment beats the alternative, but I wonder what it would be like to move on and not have my life scheduled around chemo every 2 weeks, or Herceptin?
__________________
"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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05-08-2008, 04:56 PM
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#19
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Senior Member
Join Date: Jan 2007
Posts: 27
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I don't know what I did wrong in my last reply, but the Carol H. guest was me, Carol H. Florida
__________________
Carol H., Florida
Right Breast 11-28-06
Lumpectomy
Infiltrating Carcinoma
Stage 1
Grade 11
1.5 cm
Sentinel Lymph Node Neg.
ER-
PR-
Her2+
Fish 2.5 Amplied
KI-67 20%
Radiation= 6 weeks
Refused Chemo & Herceptin
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05-09-2008, 01:49 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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One more
Just checking in to provide perspective.
Another year gone by and no change here, either -- CAF and then rads as a T1c but no Herceptin, no dose dense, no taxane, and no recurrence.
AlaskaAngel
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