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Old 05-02-2007, 11:30 AM   #1
TheresaM
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Posts: 23
Thanks all

Michelle, very interesting story you have. No, I was stage IIb when dx, the cancer just plowed through every treatment, first going through lymphs, then lungs, then skin, then abdomen. I'm on my last legs now, very weak.

I've asked this question about folks who are HER2+, er/pr- not responding to Herceptin and finding something else that works over the course of the last 3 years, and I have yet to find ANYONE who fits that category...

Theresa
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Old 05-02-2007, 02:10 PM   #2
StephN
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Location: Misty woods of WA State
Posts: 4,128
Unhappy

Hello -

Sorry to read of your plight - your disease seems particularly aggressive.

Are you too weak to try one of the new combinations such as Avastin (a blood supply interrupter) and Abraxane (Form of Taxol delivered in a liposome)?

There are other new drugs if you have a "creative" med onc in a major medical center.

I am hormone neg and have not been able to take any hormonals in my 6+ years of fighting cancer. I was also just post-menopausal at dx, which may make the difference.
Guess I am one of the few hormone neg people who have achieved a long term NED status as Stage IV.
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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 05-03-2007, 11:17 AM   #3
Shell
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Join Date: Sep 2005
Location: Philadelphia
Posts: 301
Theresa-

I've never responded to herceptin, but I did respopnd initially to cytoxin/epirubicin/taxotere. I also had a great response on xeloda for awhile, but have not done well on my subsequent treatments.... We're tring gemzar/cisplatin/tykerb currently - but it's day 22 and unfortunately I don't feel any better, but obviously we'll give it some more time.

Are you still in the wyeth trial?

Regards,
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Shell

init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 05-03-2007, 11:37 AM   #4
Lolly
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Location: Oregon
Posts: 1,756
Teresa,
I'm so sorry you aren't doing well. It's hard to think about new treatments when you're feeling weak, but maybe you can consider the Avastin, as Steph says, or a combo of Avastin and Abraxane.

I'm er/pr-, and am now on Abraxane/Tykerb. I started the weekly Abraxane last week as Tykerb hadn't arrived yet, and can honestly say I had very minimal side effects. I was give Zofran as a precaution but am not sure I'm going to need to continue that. It seems to be not as hard on the blood counts as some other chemo's I've had.

I hope this helps, and at least know that we are here for you on your journey.

<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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