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12-16-2006, 07:30 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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From San Antonio
I was going to wait until I returned to San Diego but decided to post this while the thoughts were still fresh in my mind.
Our group has received nothing but accolades from all of the medical professionals here at the Symposium. Many of them have visit our web site on a regular basis and are impressed with the level of knowledge of our members We are in the preliniary planning of several new exciting projects which I will disclose within the next few days as the details unfold.
Yes Sassy we did sit with your oncologist and had a very interesting conversation with him. My main area of concern was his perspective of our group as a clinical oncologist. His answer was rather surprising as he sees us as an asset to his practice. He benefits from Sassy's knowledge and feels that his appointments with her are more productive.
What ever we are doing, we are doing right !!!
Warmest Regards and Hugs,
Christine and 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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12-16-2006, 02:28 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Dear Joe,
It was never any doubt about what you said. You are wonderful.
Thanks for all the hard work!
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12-17-2006, 09:18 AM
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#3
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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no surprise!
THANK YOU JOE and CHRISTINE!!!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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12-17-2006, 10:28 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Joe & Christine..
what a wonderful job you two are doing by providing all of us with this wonderful site. I know that you both work very hard at this and we do appreciate it.
THANK YOU THANK YOU BOTH
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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12-17-2006, 11:32 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Joe and Christine,
Thank you and all the other members who contribute and make information available to us so that we can be knowledgeable and actively participate in our treatment decisions. As others have said before, we are helping to write the protocol as these new treatments and new era of treatment evolves. Had it not been for this site and all of you, I would be in a far different and much less desirable situation than I am now. This onc is not the one I started with, and I am so glad I found him. I appreciate him tremendously and he does appreciate my efforts to be informed and this site's efforts to inform and support all of us.
Keep up the good work---you have many stars in your crowns!
________
WEB SHOWS
Last edited by sassy; 08-22-2011 at 08:59 AM..
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12-17-2006, 01:57 PM
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#6
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Joe and Christine
No words could ever thank you enough for all the work you have done and all the information you have provided us on this site. I am new to this site, was diagnosed in June and do not have enough knowledge to post a lot but all my questions have been answered by the wonderful women in this group who have a lot of knowlege also. Thanks to all
patb
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12-17-2006, 03:45 PM
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#7
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Member
Join Date: May 2006
Location: Toronto
Posts: 14
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SA Texas info
Thank you Joe and Christine!!!!!!!!!!!!!!!! This is a great place to share information and your hard work is greatly appreciated.
The best for you and all of us!!!!! Happy holidays to all. Will be back end of January for deserving vacation after my one year non- stop treatment.
PEACE and LOVE
LILI7
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12-17-2006, 06:07 PM
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#8
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Thank you Joe and Christine for making this site what it is today and for staying current so we can become more and more enlightened and educated which helps us be our own best advocate. Your efforts, time and committment are greatly appreciated.
__________________
~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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12-18-2006, 08:30 AM
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#9
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Joe and Christine,
We are truly blessed that you work so hard for all us.
The information and contact I received on this site has
helped to save my life.
I am forever thankful!
Jean
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12-18-2006, 06:52 PM
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#10
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Thank you
Dear Joe: Thanks for all you do.. from the bottom of my heart, with deepest appreciation. God Bless!
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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12-18-2006, 08:49 PM
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#11
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Thanks Joe and Christine. That's why all of us on the www are Time's person of the year. By being here, we will speed up the progress of cancer researchers. I just wish that every one of us could hang in there long enough to take advantage. Happy Holidays. BB
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12-18-2006, 09:58 PM
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#12
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I also really appreciate this site and the knowledge and support we get from each other. Thanks Joe and Christine!!
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12-19-2006, 12:52 PM
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#13
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Senior Member
Join Date: Jan 2006
Location: ALEXANDRIA, VA
Posts: 40
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Joe, Hi.... I to would like to thank you for this site .... and also to all who contribute on a regular basis..... I do not always contribute but just reading the info and dialogue between eveyone has helped me to stay informed and given me much HOPE for the future .... I do all my reading and replying while here on my job so sometimes I get to involved with work and forget to sign on .... Again Thanks to you all .....and Merry Christmas !!!!
Debbie
__________________
dx stage 4 ... 11/04
3.2 cm mass breast & liver mets..
her2 +++ ; er- ; pr -;
11/04 treated with hercp, taxol & carboplatin - every 3 wks
3/05 ned - stopped chemo; hercp only
5/05 reoccurence left breast
6/05 added navelbiene w/ hercp every other wk
7/05 mascetomy
12/05 ned ; same regiment- every 3 wks
3/06 & 7/06 ned
9/06 stopped navelbiene.. hercp only.. every 3 wks;
10/06 pet scan shows positive lymph node in pec
12/06 PET no change;
4/07 scan showed 4 abnormal nodes in right pec area ... these have increased in activity since last scan... will start back on weekly navelbeine & hercp
7/07 PET done ..this time it showed new nodules in both right & left lung area as well as increased activity in pec area..
8/07 started Taxol & Carboplatin with Hercp every 3 wks
10/07 PET done ...Great Report ... NED ....
11/07 continue with Hercp every 3 wks & do Taxol & Carboplatin every 6 wks
4/09 still on same regiment; 1 positive node in left lung and right pec area
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12-19-2006, 05:05 PM
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#14
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Senior Member
Join Date: Nov 2005
Posts: 943
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Thanks for your encouragement and all you do for us at Her2, Joe and Christine.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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12-20-2006, 02:33 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Yes you do, do a great job and.............
i saw my onc today in Melbourne and he was there on the weekend. He didn't see you but next time i will word him up.
Thanks for everything
Christine
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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