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Old 11-28-2007, 10:56 AM   #1
Lani
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for those whose doctors, insurance cos. or govt.heath services want to stop herceptin

this is merely a case report (report of a single patient) but as the international gold standard as I understand it has been to continue herceptin as long as NED, this might be pause for thoughtL

Tumori. 2007 Sep-Oct;93(5):491-2.
When should trastuzumab be stopped after achieving complete response in HER2-positive metastatic breast cancer patients?

Beda M, Basso U, Ghiotto C, Monfardini S.
Department of Medical Oncology, Istituto Oncologico Veneto-IOV, Padua, Italy. m.beda@libero.it
We report the case of a woman with HER2-positive metastatic breast cancer who achieved prolonged complete remission of multiple liver metastases after treatment with weekly trastuzumab plus paclitaxel but relapsed in the brain soon after stopping trastuzumab maintenance therapy which had been prosecuted for almost three years. In the absence of randomized trials, the optimal duration of trastuzumab administration after achieving complete remission of metastatic breast cancer remains questionable.
PMID: 18038883 [PubMed - in process]


Since her recurrence occurred in her brain, it might have occurred anyway, but the timing of this was uncanny...
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Old 11-28-2007, 11:04 AM   #2
Lani
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article

http://www.tumorionline.it/allegati/...0(491-492).pdf
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Old 11-28-2007, 12:21 PM   #3
StephN
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Talking No thoughtfullness with that guy!

Interesting post, Lani.

In my case it took about 2.5 years after I achieved complete remission from my extensive liver mets for the tumors to show up in my head. My med onc told me he thought they had been "seeded" when my cancer was very active with those liver mets. Just took longer to show themselves, as I had NO symptoms from them when I had my annual brain MRI.

No way would he have recommended I stop Herceptin, even though it does not normally pass through the blood/brain barrier. By keeping the mets in body/organs at bay, we are protecting our brains just the same. (He did feel that with as much Taxol I took, my BBB could have become "leaky" and let some of the Herceptin through thereby killing off any more little seedlings.)

I certainly hope with the more recent information on the spread of mets to the brain, the docs would not be so cavalier about stopping a drug like Herceptin for NED patients, even though it is expensive.
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"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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Old 11-28-2007, 01:16 PM   #4
Mary Anne in TX
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It seems to me that if they would project how expensive it would be if we recur, the cost to keep us on H would be nominal! Staying on H is one fight that I would be willing to take on! They'll have to make me stop!
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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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Old 11-28-2007, 05:28 PM   #5
fullofbeans
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Very interesting post indeed.

In the UK they often stop Herceptin for stage 4 after a year like for other stages. I know someone that was stage 4 NED and recurred 4 months after they had stopped her. They are even not offering her herceptin anylonger now.. She was part of a small support group here and I have not seen her since I have heard of her recurrence. I will attend the meeting next week just so I can tell her to ask to go back on it.. incredible how clueless people here get such a raw deal.
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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.



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Old 11-28-2007, 11:23 PM   #6
Lani
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full of beans

they try that in Denmark as well

I just posted the following which does portend well for breast cancer patients requiring herceptin in the UK:

http://news.bbc.co.uk/2/hi/health/7115540.stm
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