 |
12-24-2006, 06:06 PM
|
#1
|
|
Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
|
December 24th 2001
Just 5 short years ago, if you were dignosed as HER2+, your oncologist would tell you "your cancer is aggresive and your prognosis is poor". If you were stage I to III, you had to wait for a recurrence before he would give you Herceptin. There was a myth that it caused heart attacks. In 2001, if you were diagnosed with brain mets, your survival was measured in months. There was very little information on HER2, Herceptin, or metastatic breast cancer on the internet.
Today, thanks to dedicated researchers we have turned the corner. Women who are HER2 positive now have a better prognosis than those that aren't. Tykerb another targeted therapy drug should be approved by the FDA in February. Great strides in HER2 vaccines are being made at Walter-Reed Medical Center and at the University of Washington. There are many new compounds in the laboratory ready to enter Phase I trials.
The HER2 Support Group met the challenge. Through our website, we have recruited numerous candidates to participate in various clinical trials, including 1 in the Phase I trial of Tykerb, several in the Walter Reed trial, 10 out of 20 for the Phase I trial of the vaccine in Seattle, and numerous candidates for the adjuvant trials of Herceptin here and overseas. Our members are the most educated of all breast cancer survivors.
Personally, 2006, was a terrible year with the loss of Lyn, Lisa, Hope, Janelle, Linda, Sherry from WV and others. Each passing makes the operation of this website just a bit harder.
But on the other hand, we received glowing reports from many oncologists that we met in San Antonio this month. Dr. Lupe Salazar could not speak highly enough about our "hospitality volunteer" in Seattle - Stephanie. Sassy's oncologist told us how Sassy was so informed that it made her visits with him - most enjoyable. Perhaps the greatest compliment was given at ASCO in June, when Dr. Mark Pegram referred to us as the "HER2 Support Group activists" before an audience of about 1500 fellow medical professionals.
Joe and I receive too much credit for this website for it is all of the members who help to make this website the leading resource for HER2 breast cancer patients in the world. We just built the forum, it took all of you to fill it.
We wish to thank each and every one of you for without your active participation, the HER2 Support Group would not exist.
Hugs, well wishes and happy holidays to ALL.
HAPPY FIFTH ANNIVERSARY
Christine and Joe
|
|
|
|
12-24-2006, 06:33 PM
|
#2
|
|
Senior Member
Join Date: Sep 2005
Posts: 232
|
Christine and Joe
A millions thanks to both of you.
Happy Holidays to you and your family.
Hugs,
karen
|
|
|
|
|
12-24-2006, 08:49 PM
|
#3
|
|
Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
|
Thank you doesn't seem like enough, but, THANK YOU!
Happy 5th anniversary and Happy Holidays!
Carolyn
|
|
|
|
|
12-24-2006, 09:05 PM
|
#4
|
|
Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
|
Thank you. Youv'e taken on lots of extra work for our benefit. Happy Holidays. Bev
|
|
|
|
|
12-24-2006, 09:38 PM
|
#5
|
|
Senior Member
Join Date: Oct 2005
Posts: 823
|
I want to thank you both Christine & Joe for starting forum. Before I found it, I didn't think there was hope, and now I know different.
Just being connected with everyone on this forum has meant the world to me.
THANK YOU, THANK YOU.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
|
|
|
|
|
12-24-2006, 11:20 PM
|
#6
|
|
Senior Member
Join Date: Sep 2005
Location: Spokane/Warden, WA
Posts: 67
|
Christine and Joe
thank you for helping to save my life.
dee
|
|
|
|
|
12-25-2006, 04:48 AM
|
#7
|
|
Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
|
Thank you!!!
HI Christine and Joe,
I can never thank you enough for managing this website. It is my lifeline to information, support, and to others like myself who are dealing wiht HER2 breast cancer at some level. No words can express my appreciation for your dedication and help and support.
Thank you and I wish you all the best to your family during this holiday season and the New Year beyond!!!!
Barbara H.
|
|
|
|
|
12-27-2006, 01:16 PM
|
#8
|
|
Senior Member
Join Date: Oct 2005
Location: Minneapolis, MN
Posts: 189
|
Christine,
You are a hero in my eyes. A hero is one who overcomes terrible adversity in their own lives and sees it as an opportunity to give to others. Your hard work and sacrifice has changed and saved lives, and you have brought together a place of encouragement, support, hope and love.
God Bless you and Joe with peace and health in the coming year.
__________________
Cheryl
|
|
|
|
|
12-27-2006, 08:58 PM
|
#9
|
|
Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
|
Christine and Joe,
"Thank you" could never be sufficient to express the gratitude we owe you for providing this forum of knowledge, support and HOPE!
May the new year bring us all good things and well being.
________
PERFEKTBABY live
Last edited by sassy; 08-22-2011 at 08:59 AM..
|
|
|
|
|
12-28-2006, 07:00 AM
|
#10
|
|
Senior Member
Join Date: Sep 2005
Posts: 208
|
Adding my heartfelt Thanks too, this site is such a blessing. I stand in awe of all the people who contritbute so much. Thank you Christine and Joe, you've really made a difference in the lives of so many of us. Love and hugs to all!
|
|
|
|
|
12-28-2006, 09:16 AM
|
#11
|
|
Member
Join Date: Feb 2006
Location: California
Posts: 13
|
Dear Christine and Joe,
I don't have the words to express my heartfelt thanks for starting the HER2 site. When I was first diagnosed in Nov. 2000 it was hard enough finding information on HER2 breast cancer let alone any thing positive about it. This site was such a welcome relief and a valuable tool. I have been able to share information and new developments with my oncologist and with this site and the many wonderful contributors I can rest assured that I'm always on top of any new and upcoming treatments.
I wish you and all the wonderful men and women on this site a very happy healthy 2007.
|
|
|
|
|
12-28-2006, 03:15 PM
|
#12
|
|
Senior Member
Join Date: Jan 2006
Location: ALEXANDRIA, VA
Posts: 40
|
Christine and Joe,
Thank you both for all you dedication to this site and especially your input ....
You have helped me much more than you will know ... You are lifesavers of the
best kind .... Best wishes for the New Year ... May the Lord strengthen you both to continue on ....
Take Care,
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
|
|
|
|
|
12-28-2006, 10:16 PM
|
#13
|
|
Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
|
Christine-
This site has given me so much knowledge and hope. While I also owe a debt of gratitude to the members who share this knowledge, your work was the genesis that has made it all possible.
Thank you, thank you, and best wishes to you and Joe for Health and Happpiness in the New Year!
Kind regards,
Shell
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 12:28 AM.
|
Hybrid Mode