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08-02-2007, 10:12 AM
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#1
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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New TX update
Hi ladies and thank you for all the information!
Well I started the new pill (TBFW - my own personal nickname for it) and I take 8 pills in the morning and 8 pills 12 hrs later. The pills are capsules, a tad bigger then a tylenol. The only side effects so far have been headaches. And I NEVER get headaches, so this has to be from TBFW. No tail yet tho - haha! Anyways, I see my onc every monday for labs and exam so will keep you all posted.
HUGS!
Leea
__________________
 Age 33 at dx - 9/15/06
L breast, Invasive solid DC w/ extensive DCIS, Grade 3, ER/PR negative/ HER2 neu positive (barely)
-AC DD, taxotere, taxol w/ herceptin
-Bi lat 1/18/07, multiple foci of IDC admixed with DCIS, IDC varied from 0.1, 0.5, and up to 1.6 cm, 1/19 + nodes
Expanders in place
Pregnant when dx
Mom to 4 beautiful kiddos (boys: 5 and 14 mos, girls: 17 and 3)
Recurrence in neck lymph node and 8mm spot in L breast above expander, herceptin stopped
BRCA 1 positive
Clinical trial since 7/23/07 (PARP INHIBITOR)-NED for 9 months, supraclavicle node popped back up,..so we cut it out! Full neck dissection - only 1 positive node ER/PR negative and now HER2 negative
Currently on Xeloda and NED
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08-02-2007, 11:54 AM
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#2
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Leea,
First good luck with the new trial. Could you tell us more about it?
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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08-02-2007, 12:29 PM
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#3
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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We wish you well as you continue the trial
Leea
I'm sending you positive vibes as you persue this clinical trial. Let us know what chemo is given , and ,if you know the exact names of the chemo. New drugs have numbers, and real names. Your success is all that matters. You're helping in the fight for others.. Hope you will get fantastic resuts. C trials really can help us to treat others. Thank God for women like you. Take on the fight..and WIN!! Hugs Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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08-02-2007, 12:54 PM
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#4
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Chemo p`ill... a sign of the times.
Pills are becoming an easier way to receive treatment. If they work well enough, we will see a better trend of leaving the infusion room behind.
Positive and healthy wishes are set your way.
Let us knw more about the chemo your taking. My infusions are stlll out there, but slowly becoming obsolete. Looking foward to a better future with a greater response to pills.
Let us know your progress.
Sending you my positive thoughts and well wishes. Warm hugs, Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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08-02-2007, 01:15 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Good luck!
I think it is awesome that you are participating in the trial...what they learn from you will help so many others.
It would be great if more treatments were in pill form. Please let us know how it goes.
Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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08-02-2007, 01:21 PM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Leea
Here hoping that the new drug is the magic one! It is so nice to be unleashed from the chemo center....its scary, you start to feel normal in a way....what is the name of the new drug?
__________________
"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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08-02-2007, 01:34 PM
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#7
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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a little more info
The trial is being done by Kudos Pharmaceuticals and was initially designed for ovarian cancer patients only. To participate you had to have locally advanced disease and have failed a chemo , while being BRCA 1+. The drug does not yet have a name, only KU - and a bunch of numbers. The idea is that it is supposed to create a new mechanism DNA can use to repair itself. Because I guess by being BRCA 1+, my DNA is missing those mechanisms. So in theory it is supposed to be toxic to cancer cells because it repairs the DNA. That is my understanding...I had my onc try to explain it in english (haha) and that is basically what he said.
I guess they had such a good response with the ovarian part of the study that they opened it to BC patients. They are only taking 40 nationwide and I was number 1. My onc said people (ovarian patients) were coming from all over the nation for this drug to help in their tx. I guess this is gene therapy?
__________________
Age 33 at dx - 9/15/06
L breast, Invasive solid DC w/ extensive DCIS, Grade 3, ER/PR negative/ HER2 neu positive (barely)
-AC DD, taxotere, taxol w/ herceptin
-Bi lat 1/18/07, multiple foci of IDC admixed with DCIS, IDC varied from 0.1, 0.5, and up to 1.6 cm, 1/19 + nodes
Expanders in place
Pregnant when dx
Mom to 4 beautiful kiddos (boys: 5 and 14 mos, girls: 17 and 3)
Recurrence in neck lymph node and 8mm spot in L breast above expander, herceptin stopped
BRCA 1 positive
Clinical trial since 7/23/07 (PARP INHIBITOR)-NED for 9 months, supraclavicle node popped back up,..so we cut it out! Full neck dissection - only 1 positive node ER/PR negative and now HER2 negative
Currently on Xeloda and NED
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08-02-2007, 03:05 PM
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#8
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Here's a link to an article about AstraZeneca aquiring Kudos Pharmaceuticals and then a brief outline of the trial drug which I think is the one Leea is getting. The article was published in 2005 so it describes the trial as Phase I
Medical News Today
http://www.medicalnewstoday.com/articles/35420.php
"...The acquisition of KuDOS Pharmaceuticals augments AstraZeneca's portfolio with clinical and pre-clinical compounds and programmes. An innovative, targeted compound, KU 59436, an oral poly-ADP-ribose polymerase (PARP) enzyme inhibitor, is currently in phase I clinical development.
PARP is a key signalling enzyme involved in triggering repair of single strand DNA damage. PARP inhibition selectively kills tumour cells lacking the homologous recombination (HR) DNA repair pathway whilst sparing normal cells. Known defects in HR repair include the well-characterised hereditary BRCA1 and BRCA2 mutations in breast and ovarian cancer for which diagnostic tests are available. This therapeutic/diagnostic combination offers the exciting potential that KU 59436 can be developed as a new cancer monotherapy targeted for the benefit of a definable patient population..."
__________________
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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08-02-2007, 03:15 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Wow! This will be interesting to follow!! Yay for you Leea for being brave!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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08-02-2007, 04:46 PM
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#10
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Senior Member
Join Date: Jan 2007
Location: Massachusetts
Posts: 82
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Hi, Leea. I'm wishing you lots of success with the new treatment (love the nickname!) and I hope you don't have much in the way of side effects. Keep us updated...
Hugs,
Jean C.
__________________
IDC Stage IIIA
Diagnosed Nov 2006 (routine mammogram), age 51
Lumpectomy, lymph node dissection Dec 2006
3 cm tumor, 8 cancerous lymph nodes
Grade 3, ER/PR -, HER-2/neu +++ (by FISH, average 20 copies per cell)
A/C x 4, Taxol x 12, Herceptin x 47 weeks
35 radiation treatments
Completed treatment on April 3, 2008
Chest port removed October 2009
11 years since diagnosis NED
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08-02-2007, 05:21 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Leea,
I applaud you for entering the clinical trial. Getting pills is so much more humane than sitting in the infusion center. I'm praying that this new drug works magic for you.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-04-2007, 01:55 PM
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#12
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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I want to cry every time I read a post from a 20 or 30 something with small children. Any age for that matter with small children. I am actively looking to participate in any trials that do not involve chemo. I think this is the way of the future. Thank you for being so brave. I hope I can do likewise in the near future. I also hope you are able to still do fun things with the hubby and kids during this tx. Peace Karen
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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08-04-2007, 10:28 PM
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#13
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Herceptin??
Karen:
Ask your docor to put you back on herceptin, once your LVF is back to normal. Herceptin does wonders for us...Also ask onc for a brain MRI, Take care.
__________________
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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08-05-2007, 04:06 PM
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#14
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Member
Join Date: Mar 2007
Posts: 19
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I am sending big hugs and best wishes to you that this new drug does it for you...
Cheryl
__________________
Cheryl Hamilton
DX 2/6/07
LB Mastectomy 2/12/07
3 out of 9 Lymph nodes +
4 AC DD completed
12 Weekly Taxol/Herceptin completed 7/07
Herceptin completed 5/08
33 radiations completed 9/07
Tissue expander placed 7/08
Tram Flap scheduled 12/15/08
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08-06-2007, 02:40 PM
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#15
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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1 week checkup
Well - just got back from onc for my 1 wk follow up since beginning new tx. Lump in neck may be a tad bit smaller, but it is definately not bigger. Also the spot in the leftover breast tissue is still too small to find by physical exam. So no major side effects (a few headaches and a few hot flashes which may or may not be related to TBFW) and good labs. So far so good!
__________________
Age 33 at dx - 9/15/06
L breast, Invasive solid DC w/ extensive DCIS, Grade 3, ER/PR negative/ HER2 neu positive (barely)
-AC DD, taxotere, taxol w/ herceptin
-Bi lat 1/18/07, multiple foci of IDC admixed with DCIS, IDC varied from 0.1, 0.5, and up to 1.6 cm, 1/19 + nodes
Expanders in place
Pregnant when dx
Mom to 4 beautiful kiddos (boys: 5 and 14 mos, girls: 17 and 3)
Recurrence in neck lymph node and 8mm spot in L breast above expander, herceptin stopped
BRCA 1 positive
Clinical trial since 7/23/07 (PARP INHIBITOR)-NED for 9 months, supraclavicle node popped back up,..so we cut it out! Full neck dissection - only 1 positive node ER/PR negative and now HER2 negative
Currently on Xeloda and NED
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08-06-2007, 05:59 PM
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#16
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Great News
Hi Leea,
Congrats - it sounds like this new drug may be working. Looking forward to total disappearance of your mets and a complete recovery and dance with NED.
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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08-06-2007, 06:41 PM
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#17
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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It is sounding positive! I am happy that your side effects are minimal. No new growth sounds good to me! I am looking forward to hearing more good news!Hugs,Lexi
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08-08-2007, 12:53 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Leea-
I congratulate you like the others for doing a clinical trial - I think they are so important.
Has an advil or motrin helped with the headaches?
Kind regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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