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11-11-2010, 08:55 AM
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#1
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Senior Member
Join Date: Jul 2006
Posts: 463
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NBCC 2020 - more about the plan
NBCC is serious. We are going to do this. Are you with us? More about the plan:
http://www.huffingtonpost.com/fran-v..._b_776204.html
__________________
3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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11-11-2010, 01:31 PM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: NBCC 2020 - more about the plan
Hi Debbie
This was really refreshing to read.
Please don't forget your sisters across the pond!We all need to pull together worldwide for the cure. I know a lot of us feel that a quantum shift in thinking is needed to address this beast. I feel we have been looking for the needle in the wrong haystack! Maybe it's time to look with new eyes.
Ellie
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11-11-2010, 05:09 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: NBCC 2020 - more about the plan
The "plan" is to find a cure for breast cancer by January 1, 2020.
There is a counter on the masthead of the Breast Cancer Coalition's web site. It is counting down the time left until that date.
For more from them:
http://www.stopbreastcancer.org/2020/
__________________
"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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11-12-2010, 10:39 AM
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#4
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: NBCC 2020 - more about the plan
I like the substantive ideas that NBCC has in terms of the summits and focusing research where its needed, etc. But setting a deadline does seem a bit gimmicky to me. I liken it to those politicians who set arbitrary deadlines for pulling troops out of Iraq. How can we know that by day X we will be ready for that bold move? Sure, goals are great and I am all for setting them, but putting a date deadline on it seems a bit unrealistic and hokey to me. And why 2020? Can they hurry up a bit?
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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11-13-2010, 08:24 AM
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#5
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: NBCC 2020 - more about the plan
Game on....
There is an old saying if you don't write a goal down and set a date...it doesn't get done.
__________________
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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11-13-2010, 03:53 PM
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#6
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: NBCC 2020 - more about the plan
Debbie and Steph,
Thanks for posting!
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