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09-25-2007, 01:45 PM
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#1
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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PARP trial - 8 week update
Well girls, PET/CT scans came back CLEAN. Supraclavicle node is too small to detect with PET/CT and the small spot in breast is GONE.
Physical exam shows node in neck to be about 4mm which may be all scar tissue.
Yipee! Plan is to stay on TBFW for 6 more months and then see what happens.
So far it appears to be a promising new tx for the BRCA + set.
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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09-25-2007, 01:50 PM
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#2
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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congratulation ...I happy for you ....you are doing good with your goals "kick c and babysitter grandbabies
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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09-25-2007, 01:53 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Leea,
Congratulations! Seems like you found the magic bullet.
__________________
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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09-25-2007, 01:57 PM
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#4
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Great news Leea. Keep kicking that cancer butt!!
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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09-25-2007, 04:37 PM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Leea
That is great news...like you, I am on the extended plan, trying to get the nodes to remain in remission....you are paving a new road with much luck! This is great for you and those of us who have these stubborn neck nodes!
__________________
"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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09-25-2007, 05:39 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Leea, that is great news!!!!
Tammy
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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09-25-2007, 05:42 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Hey, that's great news! And I love your codeword - it seems to me its a good ALL PURPOSE word!
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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09-25-2007, 07:05 PM
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#8
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Great news - how wonderful. May this mix be magic for you for a long time!
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09-25-2007, 09:35 PM
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#9
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Senior Member
Join Date: Jan 2007
Posts: 138
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Great news.
Karen
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09-26-2007, 03:28 AM
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#10
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Doesn't the word clean just feel and sound wonderful! Great news, Leea!!!
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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09-26-2007, 08:05 PM
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#11
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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OMG SWANKY you are in the PARP trial!!!! I am involved w an org called FORCE ( www.facingourrisk.org) and we have been trying to get our BRCA+s having recurrences into the PARP trials! I am simply OVER THE MOON for you ...Thank G-d PARP seems to be a magic bullet!
WOOHOOOO!!!
Marcia |
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09-29-2007, 05:18 PM
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#12
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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so happy for you and all of us
WooHoo, not only are you being a pioneer for so many, but you are reaping the benefits yourself. All of which you deserve. Keep us posted on all the excitement. Also, I'm afraid taht I'm quite ignorant about PARP. I would love to know what that is.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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09-29-2007, 06:57 PM
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#13
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Hi Joy...PARP is to BRCA carriers what Herceptin is to Her2 and Tamoxifen is to ER/PR+ s (HOPEFULLY, its in trials, but Leea's response is pretty telling!). An oversimplification I know, but dont know how to explain it any other way. BRCA carriers are in a similar situation as Her2 ers as far as aggressive disease and recurrence..
I am SO glad Leeas in the trial!
Bug hugs,marcia
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09-30-2007, 06:57 AM
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#14
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Thanks Marcia, I appreciate your explanation. I love the way we educate each other!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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09-30-2007, 06:01 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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Marcia - I never thought it of it that way, but you're right! Long story short, the PARP inhibitor helps correct the DNA mutation that BRCA+'s have and ultimately causes our tumors. A major over simplification, but basically repairs my DNA. The best thing? No side effects yet...I have taken the 8 pills twice a day for over two months now and am fine. Maybe a little fatigued, but can't say if that is the drug or my rather energetic family.
__________________
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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09-30-2007, 07:13 PM
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#16
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Leea,
With all that you have been through in the last year and having little ones, I think you must be a pretty amazing young woman to have any energy!
I say I like your original acronym TBFW as it seems to doing the trick !
Best wishes,Marcia
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09-30-2007, 07:16 PM
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#17
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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Congratulations on your wonderful news!!!!!!
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10-01-2007, 11:00 PM
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#18
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Swanky,
What does TBFW stand for?
I will have to ask my surgical oncologist who specializes in genetics about the PARP inhibitor for BRCA 2 people like me.
Thanks,
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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10-02-2007, 01:11 PM
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#19
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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Maryanne....
it is my own personal nickname for it (This Better F**king Work), but the formal name is PARP inhibitor. :-)
__________________
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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10-02-2007, 04:31 PM
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#20
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Right on TBFW!!!! Love it!!!
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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