| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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01-15-2008, 06:53 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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There are quite a few women on this site who have been on Herceptin three years. As a matter of fact I think 7 or 8 years is the top right now.
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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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01-15-2008, 08:20 PM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 556
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Is she just on Herceptin or she used chemo on metastatic setting?
Thanks,
Julie
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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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01-15-2008, 08:58 PM
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#3
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Senior Member
Join Date: Aug 2007
Location: Silicon Valley, CA
Posts: 76
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Almost 5 years on Herceptin
Hi, CD,
I started on Herceptin in 2/03, when I was first dx'd with bcmets... since then, through 10 cycles of Taxotere along with it, through 8 cycles - TWICE - of Xeloda with it, and most recently, through 6months of Tykerb with it, I have taken Herceptin continuously, and from the neck down, my mets have been shrunk (in my lymph nodes) or kept very indolent (slow growing - in my lungs).
The biggest threat now, for me, is brain mets - I've just been dx'd with my 4th in under 3 years. The first, large tumor, was removed surgically, the others have been/ will be treated with stereotactic radiosurgery (CyberKnife).
My oncologist told me back in 03, that many HER2neu+++ bcmets patients have only a limited time before their cancer cells acquire resistance to the drug - somewhere around 18mos-2years, I think. I've been one of the lucky ones, as has your friend. We're definitely benefitting from an added lease on life, that we'd likely not have had before Herceptin became available!
(((hugs)))
Sandy in Silicon Valley
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1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...
"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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01-15-2008, 11:16 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Starting 7th year on Herceptin
Hi -
I can hardly believe this myself!
Sandy above is one of several here who are 5 or more years on Herceptin.
Congrats to your friend for her fighting spirit.
First 7 months I had Navelbine and Taxol with the Herceptin to shut down my liver mets. Have had nothing show up since then with exception of 2 brain mets that were treated successfully.
Depending on where your friend is treated, she may well be rare in the experience of her care team. I am also rare for longevity and I am in a major cancer center. However, I understand there are many more "Herceptin Honeys" right behind me here who are doing well.
__________________
"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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01-16-2008, 06:57 AM
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#5
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Member
Join Date: Jan 2006
Posts: 10
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I'm not sure exactly. She is someone new to our support group and I haven't met her yet and will tomorrow night and will find out more. I was forwarded an email from our counselor and was trying to get some insight for her since she does not know about this site, which has been ever so helpful. I plan on getting her connected to the site once we meet and will have her connect with you ladies and so appreciate your responses. Her name is Anne and please watch for her posts. God Bless.
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01-17-2008, 06:33 AM
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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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I started Herceptin 9/03...so over 4 years for me, with and without chemo, but always Herceptin.
__________________
"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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01-17-2008, 05:19 PM
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#7
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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I've been on Herceptin w/wo chemo since 2001. Just stopped H. last month as my onc wanted to add Avastin to my new chemo mix and there's no data yet on interaction between Avastin/Herceptin. So if I end up discontinuing Avastin, I'll be lobbying to go back on Herceptin as I don't consider myself to have developed resistance to it, but I do develop resistance to chemo's after some time and then we swap for a new one. Hope this helps, and I'll be watching for Anne's post.
<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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