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04-21-2007, 05:51 PM
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#1
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Senior Member
Join Date: Jun 2006
Posts: 153
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er- girls
How many of you had er- that progressed to bone mets as the first place of matastisis?
This disease is so hard...could you please just humor me.
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04-21-2007, 06:00 PM
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#2
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Senior Member
Join Date: Jun 2006
Posts: 153
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feeling uneasy about treatment
bump..................
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04-21-2007, 10:28 PM
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#3
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Senior Member
Join Date: Jun 2006
Posts: 153
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really no one? That is encouraging
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04-22-2007, 05:15 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Penelope
My original tumor was 7mm like yours, ER- PR -, and the first place I progressed was to the supraclavicular nodes in the collar bone area....another common place seems to be the mediastinal nodes in the chest, but it would show up on a CT scan....even tiny ones. Hope this helps.
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"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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04-22-2007, 11:31 AM
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#5
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Senior Member
Join Date: Jun 2006
Posts: 153
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thanks for your reply sheila.
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04-22-2007, 02:20 PM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Hi Penelope,
I'm er/pr- and like Sheila first progressed to supraclavicular and neck nodes, which wasn't surprising as I was node positive...Haven't progressed to bone yet, and I've been Stage IV since 2001.
I remember having sternum pain after my mastectomy, but it eventually disappeared. You should still keep an eye on it, and ask for a PET/CT if it continues to be a source of anxiety for you.
<3 Lolly
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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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04-22-2007, 03:56 PM
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#7
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Senior Member
Join Date: Sep 2006
Location: Bartonville, IL
Posts: 70
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How about... is there anyone out there that the cancer has not progressed? Am I sure to get matatsis somewhere! I've never had a CT scan. Getting scared!
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Karla
8/05 NORMAL MAMMO
11/05 DX AFTER FINDING LUMP AGE 47
STAGE 1 HIGH RISK
1.1 CM/NODE NEG
ER-/PR- HER 2 +++ GRADE 3
12/05 PARTIAL MASTECTOMY
1/06 CHEMO AC DD X 6
5/06 RADS X 30
10/06 STARTED HERCEPTIN AFTER 3RD OPINION
3/07 GENETIC TESTING-GENE VARIANT FOR BRCA 1 AND 2
3/07 STOPPED HERCPTIN DUE TO LOW EF
BSO 8/08 (P53 SIGNATURE--PRECANCEROUS CELLS)
11/08---IN A STUDY/MRI EVERY 6 MONTHS/MAMMO EVERY YEAR
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04-23-2007, 08:44 PM
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#8
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Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
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Karla,
did you not get Taxol? How many weeks of Herceptin? Yes, there is alot of us that have not progressed. It looks like you were stage 1 and neg nodes. I had 34 and not progressed. It will be 4 years this Aug. You have a great chance!!
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Michele Ulmer
dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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04-24-2007, 09:16 AM
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#9
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Senior Member
Join Date: May 2006
Posts: 143
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Hi gals. I have a question for you. Has anyone with her+ er/pr-, very fast growing pathology, had a small (tiny) lung met that just sat there, (while getting NO treatment) didn't grow, for a year or two? My doc says that could be possible, but it doesn't seem like it's that way for us her+ girls (she has a general onc practice with few her+ bc patients)
I've had two false positive (even my doc has admitted that the readings were "bungled') lung ct scans, where tiny spots were found by the radiologist, then shown NED from a following PET/full body CT.
My onc just brought up scanning yet again, just to make sure, and I don't want to go through this again, or the possibility of an unnecessary lung biopsy! I'm high risk -- stage 3a, but just hit two years NED (finished herceptin last August) and absolutely no symtoms (I'm a runner, etc.) Feeling great.
I'd love to hear opinions, experiences, any advice that might help me decide whether to put myself through another scan or not.
Best to all. Thanks.
Linda
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04-24-2007, 09:28 AM
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#10
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Senior Member
Join Date: Feb 2006
Posts: 437
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Hi Linda
I am coming up on my 2 yr mark, and my last scans last yr were neg.
Is it possible for you to have the scans done by a more experienced
BC Center?
There other reasons for something to show up on a scan besides mets, so no growth,with no txs for us her girls is a good thing I think.
For me though, I would want to check it out to be sure.
Good Luck
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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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04-24-2007, 11:35 PM
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#11
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Senior Member
Join Date: May 2006
Posts: 143
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Hi Linda:
Thanks for your reply. That's a good suggestion, to continue to scan but insist on either choosing the radiologist, or traveling to big city center for the test.
Best
Linda, too.
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04-25-2007, 05:34 AM
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#12
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Senior Member
Join Date: Sep 2006
Location: Bartonville, IL
Posts: 70
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Michelle,
I didn't receive Taxol. After asking 2 oncologists about it they both said no. I received almost 7 doses of Herceptin. (6 mo. after chemo) They had to stop the the IV during the last treatment due to Muga results.
I am so glad you are NED. That is awesome! Priase God!!! Thanks for your support and encouragement.
__________________
Karla
8/05 NORMAL MAMMO
11/05 DX AFTER FINDING LUMP AGE 47
STAGE 1 HIGH RISK
1.1 CM/NODE NEG
ER-/PR- HER 2 +++ GRADE 3
12/05 PARTIAL MASTECTOMY
1/06 CHEMO AC DD X 6
5/06 RADS X 30
10/06 STARTED HERCEPTIN AFTER 3RD OPINION
3/07 GENETIC TESTING-GENE VARIANT FOR BRCA 1 AND 2
3/07 STOPPED HERCPTIN DUE TO LOW EF
BSO 8/08 (P53 SIGNATURE--PRECANCEROUS CELLS)
11/08---IN A STUDY/MRI EVERY 6 MONTHS/MAMMO EVERY YEAR
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