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04-29-2008, 11:25 AM
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#1
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Stage IIIB ER/PR(-) ...what are you guys doing post-treatment?
I'd like your opinions....I have kept going with Herceptin since my main treatments ended in August 2005 (see my signature for details). I had one year of triple dose Herceptin every 3 weeks and since then have gone with Herceptin quarterly. I'm not aware of other options for post-treatment in cases like mine where the patient is hormone-receptor negative. I'm considering dropping the Herceptin, and I want to know if there are other things I should consider.
For those of you in a situation similar to mine, what are you doing for ongoing preventative treatment?
thanks!!
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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04-29-2008, 11:47 AM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Hi Val -
Good to see you. I had forgotten you were doing the quartely Herceptin.
Has your blood work or tumor markers changed at all during this time??
Have you considered one of the vaccine trials?? There is some improvement in that direction, and new ones on the horizon.
What about diet/supplements? I think you are on board there.
I am also hormone neg, and am extremely thankful to be a responder to Herceptin.
Don't forget about getting regular exercise or joining a walking group.
__________________
"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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04-29-2008, 12:03 PM
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#3
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Thanks, Steph...
** I've never had blood work or tumor markers, so don't know
** Haven't looked into vaccine trials in the last 12-18 months--I robably should read through them again.
** I still teach spin (indoor group cycling), so exercise isn't an issue
** I take vitamins; and I am trying to eat better -- still love junk food :-)
I was hoping that there was some new magical follow up med that popped up since I have been active on this board...one can dream!!!
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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04-29-2008, 04:02 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Hi Val ~ I am really impressed with the quarterly herceptin. I haven't had any treatment since August 04 when my yearly Herceptin was over. I eat healthier and am happier in my personal life but other than that nothing new!
I'm curious what others say. I too was ER/PR negative.
Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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04-29-2008, 04:42 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 823
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I am stage III A and am ER/PR Negative.
I haven't any treatment since I finished my year Herceptin in September 2006.
I do still however see my Onc every 3 months for Blood work and markers.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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04-29-2008, 05:04 PM
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#6
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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I had a feeling that I'd hear that others aren't doing anything (simply because there isn't really anything out there). I could probably continue indefinitely on quarterly Herceptin (I have a great health insurance company behind me), but I'd really like to wean myself off Herceptin, but I'm a little nervous about doing nothing.
I'm thinking about talking with my health plan about paying for me to see a nutritionist who can get me and keep me on a program to get me off the Hostess donuts and other crap that I eat every day. I need to find a way to replace the calories I take in from the crappy food--I can't afford to lose weight--I burn a lot of hyper energy. Weird problem to have, but needs to be dealt with.
Anyway, if anyone else is doing something different, please let me know. I'd love to know how much we've decreased our chances of experiencing a recurrence because of the post-treatment Herceptin; and there has to be a diminishing return with the quarterly Herceptin I've been doing, but the data isn't out there yet (right?) to tell us that...
thanks!
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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