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06-24-2006, 03:31 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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IBC - silent killer - good video
Hi Everyone -
My cousin in Tennessee sent this to me and it is from my own back yard.
This link is to a very good newscast about why inflammatory breast cancer is so hard to catch. The blonde woman doctor being interviewed is my new med onc.
You see that speaking out CAN have some results.
Enjoy and pass it on.
http://ww3.komotv.com/global/video/p...1=785456&h1=Th
P.S. The blonde newscaster in pink is a brain cancer survivor.
__________________
"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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06-24-2006, 07:33 PM
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#2
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Thanks Steph, you are always on top of things. Good luck with your new oncologist. I am sure you will be able to share much of your knowledge with her. hugs, Sandy
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06-24-2006, 09:01 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Thank you so much. I am forwarding this to everyone in my address book.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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06-25-2006, 08:37 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Kudo's
Steph,
Great information and coverage - I learned much and will pass this along.
Many thanks,
Jean
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06-25-2006, 08:40 AM
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#5
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Senior Member
Join Date: Jun 2006
Posts: 153
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can't seem to open this. Is there a trick? Does it take a long time to load?
__________________
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06-25-2006, 02:07 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Penelope, I had problems getting it to open also...but I found out it was my firewall stopping it. I shut it down for one minute and REFRESHED the page...and it opened right up. 
That might NOT be your problem...but just threw it out there in case it is. One thing to check if you even have a firewall. Good luck.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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06-25-2006, 06:12 PM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Copy and paste
You might also try copying and pasting the link into your browser, instead of trying to open it from the message window.
__________________
"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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06-26-2006, 08:08 PM
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#8
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Member
Join Date: Nov 2005
Location: Southern California
Posts: 8
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Steph -- You're right. This is a great video. I was diagnosed with IBC in January 2005. Found it myself and it didn't show up on subsequent mammogram! It seemed like it appeared overnight. It is extremely fast growing. After chemo, mastectomy and radiation, I am cancer free. All women really do need to know about this disease. Thanks for spreading the word!
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06-26-2006, 09:46 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Steph - thanks for posting this. Very interesting. Looks like you have found a great new doctor.
Chris
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07-02-2006, 09:07 AM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 476
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There are six or seven video clips, including a plane crash in the Andes, a big fire of a mansion, someone painting American flag on his roof, etc, but no IBC silent killer story.
Ann
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07-02-2006, 09:08 AM
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#11
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Senior Member
Join Date: Oct 2005
Posts: 476
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There are six or seven video clips, including a plane crash in the Andes, a big fire of a mansion, someone painting American flag on his roof, etc, but no IBC silent killer story.
Ann
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07-02-2006, 11:19 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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I tried the suggestions but my mac would not let me view it.
Barbara H.
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