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01-08-2008, 04:21 AM
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#1
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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How goes the Parp trial swanky?
Been watching for an update and hoping you are well. Kim
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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01-08-2008, 09:44 PM
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#2
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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Kim - thanks for checking on me! All goes well, I am 6 months in and gearing up for my 3rd round of scans on mon. As part of the trial we have to get scanned every 2 months. My 1st two scans were clear so I am hoping to keep the trend going LOL. I will post results as soon as I have them. My onc is somewhat at a loss of what to do. The trial's goal is to maintain disease, keep it from progression and best case scenerio shrink the tumors. But in my case it shrank them until they don't show up on scans. So does he take me off the trial and hope all the little buggers are dead? Or does he have me continue just in case? We are looking into whether I can stay on the drug while doing rads...I had my recurrence before I made it to rads. So I guess it is a good dilemma to have, but I am scared to lose it. Anyhoo, still no side effects other than a mild headache that pops up every once in awhile. I asked for an MRI of the brain too because I have never had one and I want to make sure the headaches are definately from tx.
I will update more after my scans. Wish me luck!
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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01-09-2008, 04:30 AM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Oh, Leea, that is terrific! I can't wait to hear more great news from your scans! Isn't it hard to decide those whether to keep on going with the drug or "take a chance" on stopping? I'm so excited for you. ma
__________________
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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01-09-2008, 05:53 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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Leea
This combo seems to be magic for you....I am so happy...I do know it is hard trying to decide when to "quit" for fear of what will happen.....saying prayers for clean scans for you!
__________________
"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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01-09-2008, 06:11 AM
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#5
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Senior Member
Join Date: Jan 2008
Posts: 305
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WOW - may your good luck continue! Best of luck with your scan.
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01-09-2008, 08:01 AM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Leea,
Great news that the little buggers have been knocked into oblivion. I guess This Better F*cking work - worked!!
Thanks for posting when you get your scan results back which will show you 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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01-09-2008, 09:49 AM
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#7
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Swanky girl,so glad you posted! Please let us know how you are periodically,its so great to be able to root you on!
Marcia
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01-09-2008, 09:55 AM
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#8
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Senior Member
Join Date: Aug 2006
Posts: 492
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Swanky,
Glad you are an overachiever in the trial! Best of luck on your scans and keep up the good work!
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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01-10-2008, 01:11 AM
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#9
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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Hip hip hooray!
Thanks for giving such great news. I really am excited about your good progress. Thanks again for keeping us informed and may you continually exceed all expectations!
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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01-10-2008, 01:35 AM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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That is excellent news. That's great that you have had no nasty side affects...its a major plus but what a difficult decision to be left with...to stop for now, or continue . (That right there would give me a headache.) Good luck on your brain MRI...you will have peace of mind once that comes back clean...and it will.  Hang in there.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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01-16-2008, 08:19 PM
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#11
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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Scans were still clean! I didn't get the MRI tho...I still have expanders in and they have a metal port. So CAT scan of brain scheduled for Feb just to be safe. Still no answer regarding doing rads while in trial so we continue as is for now.
__________________
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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01-16-2008, 09:05 PM
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#12
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Great News Swanky!!
Keep up the good work - dare I say it, does this mean you are 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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05-19-2008, 11:58 PM
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#13
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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just checking on you again. You are pretty close to my daughters age and she is BRCA positive also... Hoping the trial is a winner. Kim
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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05-20-2008, 08:09 AM
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#14
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Senior Member
Join Date: Sep 2005
Posts: 556
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Congratulations Swanky. Very happy to hear the good news. Keep it coming.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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05-23-2008, 10:35 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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Kim - i flunked out of the parp trial a few months ago. After parp alone wiped out the supraclavicle node for almost 9 months the pesky supraclavicle node popped up again. In fact I just had that node surgically removed and am home recovering. I think the PARP was wonderful and they believe it will be even more effective given with chemo. My onc actually asked the study if we could do rads while I was on the study but they quashed that idea...I honestly believe that had we got the go ahead it woold have taken care of the problem. So now I am off to rads and then chemo - xeloda and tykerb.
__________________
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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05-23-2008, 10:56 PM
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#16
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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Well, now I see why you have been on my mind! Sorry that you had to stop. I will be praying that tykerb/xeloda will be the ticket out of any more recurrances! I have a lot of hope for that Parp to be a heavy hitter for us in the future. Take good care of yourself.
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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