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12-24-2007, 11:00 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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Our Message of Thanks and Hope
On this our 6th Anniversary, I wish to thank everyone for their active participation on this website on behalf of ourselves and our Board of Directors.
A very special thank you to Rinaina, Donna, Loren, Becky, Sheila, Brenda, Chrissy, and Jean, for helping us at ASCO and San Antonio. We also wish to thank Kate for keeping everyone posted on the latest happenings at the Breast Cancer Symposium.
We will be expanding our outreach and participation at bc related events in 2008 and will be reaching out for volunteers to assist us.
It was six short years ago when The HER2 Support Group went online. It was the vision of Christine and I just put it together for her as her Christmas present. Boy have things changed ! ! !
During our first 12 months we averaged just 100 visitors a day, today we have 1500.
Women who were HER2 positive were once the outcasts. Now with Herceptin, Tykerb and a host of other targeted therapies, we are the fortunate ones. Drs. Eric Winer, Mark Pegram, Dennis Slamon and others are confident that they will be able to control HER2 breast cancer within the next ten years.
As our organization grows, so will our program. We will be working on a Spanish version of our website this year. We also wish to announce the
Ann-Michele Higgins Scholarship Program in conjunction with the Alamo Breast Cancer Foundation. The HER2 Support Group will fund two advocates to enroll in the Foundation's Advocacy Program at the San Antonio Breast Cancer Symposium starting in 2008.
Wishing you all a Very Joyous Christmas and a belated happy Hanukkah.
May 2008 bring peace to the world and a cure for cancer.
Hugs and Well wishes.
Christine, Joe, Debra and Danielle
__________________
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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12-24-2007, 11:06 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Merry Christmas and happy holidays to you and Christine also, Joe! I know you know how grateful we all are for the gift of the website to Christine and to all of us so long ago. It has meant the world to me, and to many, many others---a place to turn when there is no other place to turn, accurate, reliable information, and most of all loving caring people who have experienced the same physical, mental and emotional pain and can give comfort as no one else can. Thank you both so very very much! We all send our love and wish you the best for the new year ahead. Hugs, Tricia
Last edited by TriciaK; 12-24-2007 at 11:08 AM..
Reason: add
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12-24-2007, 12:11 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Merry Christmas Joe and Christine from Ireland and good health to all of us in '08...roll on a cure!!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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12-24-2007, 12:40 PM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Christine and Joe
Merry Christmas to both of you, and thank you for all the hard work you do for all of us....you have given each person who comes to this board the gift of knowledge, perseverence, humility and love....may your gift to us return to you both tenfold!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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12-24-2007, 01:36 PM
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#5
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Senior Member
Join Date: Sep 2005
Posts: 182
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Dearest Christine and Joe;
Words can not express how blessed we are on this board by your wonderful gift to each other, that shines so strongly and steadfastly lights the way for all of us. My god bless you with love, happiness, and of course health in the coming year.
thank you Merry Christmas
KK1
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months
Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.
July 2021- start ENHERTU
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12-24-2007, 01:58 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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Christine & Joe, I was left to fend for myself when DX. I seriously did not get any help from my so called medical team. They handed me a couple pamplets and told me I had alot of decisions to make? (I was sitting there thinking...WHAT DECISIONS?!) No one told me anything...they just sent me on my way. I was scared beyond belief. But I FINALLY had hope when God directed me to THIS board. I really don't know what I would of done had I not came across it. Every question I had the women here answered all of them for me. What a true blessing it was to find this board. God bless you both. Have a very Merry Christmas and a HAPPY NEW YEAR!
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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12-24-2007, 07:00 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Words are so inadequate to express how blessed I feel by Christine's Christmas present of 6 years ago! Thank you for being exactly who you both are for being such giving servants and leaders. Merry Christmas to you, mary anne
__________________
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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12-24-2007, 07:16 PM
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#8
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Thank you Joe and Christine for your vision. This site, and everyone connected to it is a priceless gift.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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12-24-2007, 09:57 PM
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#9
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Joe and Christine, and everyone else here, may God bless you all with a Merry Christmas and a Happy Healthy New Year! Joe and Christine, thank you so much for having the vision to create this wonderful sight and the stamina and devotion to keep it going. You all helped my darling Nicola in so many ways. Love, Bill
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12-25-2007, 03:07 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Joe and Christine,
Merry Christmas and Happy New Year!
You are so very special - the best gift any of us could receive.
love
sarah
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12-25-2007, 03:26 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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You are the best!
Merry xmas and happy new year to you, all the best for 2008.
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12-25-2007, 08:01 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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Thank you!!!!!!
Merry Christmas and Happy New Year to you, Christine and Joe!
Thank you so much for this website. I tell all my caretakers at the Dana Farber about it, and even memtion it to other patients I meet who are on Herceptin. It is a very important resource to me. I wish I had known about it six years ago. When I was diagnosed in 1998 I didn't know that I was HER2 postitive until a few years latter. After about four to five years I became complacent with the thoughts that I wouldn't recur. What a surprise in May of 2004 when I was diagnosed with a 3cm brain tumor and mets thought out my body.
In 2004 this website gave me hope. At the time I was in shock, relatively calm, with little fear except for what would happen to one of my daughter who has autism. After I discovered this website, it became my lifeline.
Fast forward to almost 2008 and I am still here and doing well with the the new trial of Herceptin DM1. Currently, the cancer is only visible in the bones and they are healing. My tumor markers are currently normal. I am able to have a life and am still working.
In 2004 I could easily deal with the responses from the members who were having difficulty, and appreciated all of their responses. Some of them are also still here. In addition, it was so helpful to read the testimonies of the survivors, and to gain an understanding of HER2 breast cancer from such a reliable source.
I can never thank the two of you enough and all the members who take the time to write.
Best wishes to you and our members.
Barbara H.
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12-25-2007, 08:24 AM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Joe & Christine,
Happy Holidays to you both and thank you from the bottom of my heart for all the hard work that you put into this website. This is undeniably the best site on the web for anyone who has HER2 breast cancer. Thank you for your efforts.
__________________
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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12-25-2007, 08:26 AM
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#14
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Senior Member
Join Date: Apr 2006
Posts: 131
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I also echo the thoughts and well wishes of the great folks on this board. I hope that a cure for this dreaded disease is found and found soon.. thanks agoin for all the work that you do for us... It is much appreciated.... Merry Christmas and a Happy New Year to all...
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12-25-2007, 08:43 AM
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#15
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Merry Christmas and Happy New Year to our dear Joe and Christine - I must echo the praises and best wishes of all here on the board. Thank you for your devotion to this site, I truly appreciate all your efforts.
May you and your family have the happiest and healthiest 2008 - and of course the biggest wish is that the cure for cancer is discovered in 2008.
all the best
caya
P.S. thanks for the belated Hanukkah wishes...
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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12-25-2007, 09:58 AM
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#16
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Thank you for this wonderful web site and all the work you do to
keep us informed, up to date, this knowledge gives us power to
be advocates for ourselves and get the best treatment available
today. I would be lost without you and all the wonderful members.
HAPPY NEW YEAR!!!!
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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12-25-2007, 11:34 AM
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#17
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Merry Christmas for you both and everybody on this board ...is ironic in the beginning of this dreaded disease the "c" word canser was reason to make cry and now when I see the other "c" word CURE make cry also ...so who understand, thank you for bring hope in each post that you write it Joe and Christine!!! and just in case you need any help with Spanish translation for 2008 I will do my best to help and you can count on me ...Of course with our GOD Help ...also
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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12-27-2007, 09:18 PM
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#18
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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I hope everyone's holidays were wonderful and I wish everybody a very Happy and Healthy New Year.
Joe and Christine, it is you who should be thanked for everything you do for all of us. It was my pleasure to be a part of this years ASCO in Chicago and to meet both of you in person. I also had the pleasure of meeting your lovely daughter Debbie too. I am willing to help out in anyway I can for this support forum.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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12-25-2007, 04:20 PM
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#19
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Joe and Christine - I wish you the Merriest Christmas ever and the most joyous, healthful and prosperous New Year ever, as well. I am humbled by all I have learned from the two of you and what you have added to my life. You are both heros to me. Thank you for taking me under your wing and allowing me to be a part of your awesome outreach for HER2 survivors.
And to all of our family on this amazing website - love and joy to you during the Christmas season and all year long.
Love, Brenda
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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12-25-2007, 05:13 PM
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#20
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Joe and Christine, thank you just doesn't sound like enough. How do you thank someone for giving you back your sanity and allowing you to connect with so many new friends and family? I don't know what I would do without this wonderful meeting place. I appreciate both of your hard work and I pray that you have a very Merry Christmas and a great New Year.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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