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06-28-2009, 07:45 PM
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#21
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Senior Member
Join Date: Dec 2006
Posts: 415
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Yay Chrisy!
Thanks for sharing your wonderful news.
Successful treatment for any one of us is a VICTORY of ALL of us!
Keep the Faith~
Jessica
Dx - 5/17/2002 @33yo ;Stage IV - IDC + liver met;
Lumpectomy, 12/12+ nodes; er/pr-, Her2+++
Tx1 - Navelbine+Herceptin x 8 wks; No response, progression - single liver met to "innumerable/immeasureable"
Tx2 - ISIS 2504 - clinical trial x 6mos
Taxol + ISIS (continuous IV);partial response.
Tx3 - Taxol+Herceptin x 13 weeks
NED 
NED 9/11/03-9/17/04, then single liver met recurrence.
9/04-Recurrence 1- Taxol+Herceptin x 4 weeks prior to RFA, but NED again, cxl RFA.
12/04 -Recurrence 2 - single liver met
1/05 - RFA - partial response
2/05 - Abraxane+Herceptin x 9 weeks;No response due to improper dosing(?)
3/05 - Taxol/Carbo/Herceptin to NED again.
11/05 - Recurrence 3 - same single liver met
12/05 - Right hepatectomy-55% liver removed. Success. NED in liver ever since.
2/06 - Recurrence 4 -single lesion in L breast again
3/06 -excisional biopsy. 1cm IDC, extensive high grade DCIS.
No tx due to liver still healing post hepatectomy, follow with Herceptin & scans to keep an eye on DCIS
12/06- L mastectomy w/ reconstruction 3/07 & 8/07
10/07 - Recurrence 5 - Supraclav nodes
Tx4 -Gemzar+Herceptin, til NED 3/08.
9/08 -Recurrence 6 -Supraclav nodes again.Rads1 - x 7wks
10/08 - Acute Renal Failure - ICU x4 days, hospital 1 week,
stents in ureters/kidneys x 4mos.still no known cause???
10/08 - Recurrence 7 -Sternal nodes; supraclav -NED
Tx5 - repeat Gemzar+Herceptin; NED in 1/09; finish GH cycle to 3/09.
4/09 - PET scans shows recurrence 8 in sternal nodes...progression while on GH cycle.
6/09 - Tykerb/Xeloda...so far, so good. I have "the Rash"... |
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06-29-2009, 08:01 AM
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#22
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Senior Member
Join Date: Nov 2007
Posts: 210
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chrisy, you had mentioned in the past that their were a few other women at your center being treated with TDM-!. have you heard how they are doing.
has dr rugo pursued anymore talks about compassionate use being an option sooner than outright approval for TDM-!
run to live
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06-29-2009, 10:23 AM
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#23
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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runtolive
I personally know one other woman who started the study at the same time as I did and is also in the continuation study, she's doing great. There are others also doing well; I just don't know them! I'll ask next time I'm here if there is any further news on compassionate use - we really need this to be available for more people.
Donna - LOL, you're right! Sheila would recommend a chocotini for sure. I guess I'll have to settle for a muffin, they don't have martinis here in the infusion center (only the sort of cocktails that come in an IV)
__________________
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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06-29-2009, 02:59 PM
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#24
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Senior Member
Join Date: Sep 2005
Posts: 556
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Great news! I am so happy for you.
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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06-29-2009, 03:15 PM
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#25
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Chris
I am so happy for you.....this is great news for all of us who are waiting to be able to get this drug.....I am sure I can figure out a beet juice martini just for you.....You are my hero....and no one deserves this good news more than 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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06-29-2009, 05:00 PM
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#26
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Great News! I also had great news to post and off course it feels wrong when others are having a hard time. But I also think that great news gives hope to many on this site too.. certainly does for me, knowing that it is possible is half the battle.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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06-29-2009, 05:16 PM
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#27
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Chrisy,
Thanks for letting us know this great news. You're a trail blazer for our cause.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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06-29-2009, 08:01 PM
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#28
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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SHEILA!!!!!!!
Bite your tongue! Beet juice martini??? puh-lease!
But if you can figure out how to make chocolate beets, that would be good
__________________
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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06-29-2009, 08:44 PM
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#29
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Chrisy,
This is wonderful news....of course you must share it and also gives us the pleasure to feel joy along with you.
Wishing you contined JOY!!!!
Huge Hugs
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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07-01-2009, 11:37 AM
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#30
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Adventures in Drugland
Dear Chris -
You are one of the Standard Bearers for the T-DM! drug and, as such, we need to keep up with how you are doing and continue to do. With early entry and good success, your results have meant a lot! It is the likes of YOU that will help get the FDA approval sooner than later!! (This is not flaunting - it is contributing to a body of scientific knowledge.)
My med oncs have called me a "Standard Bearer" for long -term Herceptin and have made me understand how important it is for people who do well to stay out in Canserland helping others in this place to find their way.
Rejoice in your good fortune and ability to utilize this drug as a successful force against a really pernicious disease. We join you in that rejoicing.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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07-01-2009, 03:34 PM
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#31
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Chrisy, awesome news! I hope they fast track this drug I could use me some of this!
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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07-01-2009, 04:00 PM
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#32
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Wow, Chris! You go, girl! Thanks for sharing the good news. You are one of the trailblazers.
__________________
For Nicola
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