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04-30-2008, 04:59 PM
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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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A Message from Christine and Joe
Thanks to all of you our reputation is growing in the healthcare community. Often we are approached at cancer meetings by oncologists and researchers and are complemented on our website and the level of knowledge of all our members.
We feel that as an advocacy community we should support cancer research by assisting researchers and pharmaceutical manufacturers when we feel it is in the best interests and would be beneficial to our members.
From time to time we are requested to provide volunteers for and to provide input for various programs sponsored by drug companies. We turn down a large majority of these requests as purely marketing schemes or ploys to collect email addresses.
Please feel confident that any surveys or call for volunteers has been carefully reviewed by us before they are presented on these boards.
Warmest 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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04-30-2008, 05:27 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Dear Joe and Christine,
There are few ways we can repay you and Christine for all your hard work on this site ..and always in our best interests! Its little enough that we can do by volunteering when we can. Thank you once again for all that you do.
Warmly,Marcia
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04-30-2008, 05:59 PM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Amen, Marcia!
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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04-30-2008, 06:04 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Amen & Amen!!
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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04-30-2008, 08:30 PM
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#5
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Thanks Joe and Christine for everything you do!
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05-01-2008, 07:21 AM
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#6
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Christine & Joe - thank you so much for your thoughtfulness and respect you show for everyone here - it is very much appreciated.
Keep looking after yourselves too eh?
Love & Blessings & BIG thank yous to both of you.
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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05-01-2008, 11:13 AM
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#7
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Senior Member
Join Date: May 2006
Posts: 3,142
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Message
This is the best site for Her 2 postive breast cancer people. I tell my docs about it and suggest it to patients in his office.
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05-01-2008, 04:27 PM
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#8
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Dear Joe and Christine,
I feel so grateful that I could found you in the web and learn so much on this illnes, that it has helped me to cope and fight with more strenght and faith. Specially in my case that I am in a different country with different resources. Please book me as avolunteer in all that I could be helpful with. I will surely be there. Thanks to you all I heard about the BRCa1 and BRC2 test. These analysis are not done in my country, so we women with a Breast CA DX do not know what could come ahead. Thanks to you I fought and got to the Instituto Nacional de Cancerologia in Mexico City, where they took samples of my blood and send them to the US to get the test done (test was done as part of their research), I will not have the results but until probably June or July, but I will know what else I can do from there on. This, Thanks to the information I have gotten in this site. THanks to you all again and again.
With deep appreciation,
Paty
(Mexico)
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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05-02-2008, 04:26 AM
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#9
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Thank you Christine and Joe for all you do.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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05-03-2008, 05:36 PM
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#10
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Joe - More than a free vacation, the AACR conference was a huge awakening for me. I have been involved in advocacy for the PTA (before cancer), and I've been involved in bc events, but nothing like that. I was overwhelmed with all the information (still sifting) and VERY impressed with you and Christine. I knew you both worked really hard for all of us, but now I know first hand. I have always been proud of being part of this group; but after attending this event and speaking to so many researchers and pharmacetical reps I am extemely proud to know what a huge impact your work has done for us and the industry. I am looking forward to the oncology nurses convention and representing the Her2support organization once again!! I know you will only put forth surveys and information that comes from reliable sources. Thank you for ALL you do!!!
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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