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09-26-2006, 04:59 AM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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New IBC Message Board
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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09-26-2006, 12:36 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 Joe, you and Christine always take our requests and concerns to heart. I think it will be much easier for us IBC'ers to sort out others that are having similiar issues. I know I forget who is actually IBC on the her2 and who isn't as there is so much valuable info being posted. I love it all but some times I need to get past and go right to the source and not have to sift through so much info. Thanks so much. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
Last edited by Sandy H; 09-26-2006 at 07:57 PM..
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09-26-2006, 05:47 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Just a question regarding IBC -- can you have IBC and be HER+++?
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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09-26-2006, 06:00 PM
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#4
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Kate, a resounding yes.
We have several members on our boards who have IBC and are HER2 positive.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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09-26-2006, 06:02 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Thanks for your quick response Joe. I'm learning all the time. I never knew I would someday know so much about breast cancer -- never thought I'd have to. This site has a wealth of information.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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09-26-2006, 07:33 PM
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#6
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Hi Kate, I am IBC and her2 positive. Most of us IBC'ers are her2 positive, and ER/PR neg so we take Herceptin. Some are her2 pos. ER/PR pos. so they can take Herceptin and hormones. A few are the triple negative. Her2 neg. ER/PR neg. That is a tough one because there is no Herceptin or hormone to take-meaning no maintenance. I hope you are not confused if you are post again and I will try to clarify this for you. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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09-30-2006, 02:00 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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Hi Joe,Thanks for the new board. Although I sounded a bit grumpy in my last post, I am very pleased that you have established this special board. Cheers
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