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12-16-2007, 06:59 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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We Are Family
In describing our support group to healthcare professionals this week at San Antonio, I came to the realization that we are actually one large extended family. The compassion and caring for each other among our members is surely phenonimal.
We realize that all of us wish to put breast cancer behind us and try to restore our lives to normal. Others may wish to take a vacation from cancer. This sudden disappearance sometimes causes great concern as as cancer patients, we fear the worst.
A few months ago, I was requested to compile a database of phone numbers and addresses for the sole purpose of contacting members when they suddenly "disappeared" from the boards. This simple request required a great deal of soul searching as we are morally obligated to respect the absolute privacy of everyone on this website. It is an obligation that is sacred to us.
After months of work, we have modified our registration procedure and am now prepared to collect the information. The information will be encrypted in our database and the only person who will have access is myself or anyone that I delegate.
If you wish to add your information, access "UserCP" go to "edit options" and add your info. DO NOT check the box that allows Vcard downloads.
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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12-16-2007, 08:36 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Joe...
the Vcards downloads box is ALREADY checked on mine, should I UNCHECK it? Thank you.
Rhonda
http://her2support.org/vbulletin/pro...do=editoptions
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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12-16-2007, 10:27 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Thank you Joe, and Christine! You are so right about this feeling like family! It is about family that understands! My own family does not "get it" alot of the time. They are supportive, but at a loss for the right words, etc. Here, we all are together in the fight for our lives, and that spells...family!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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12-16-2007, 10:40 AM
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#4
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Thanks so much Joe!
Dear Joe,
Thank you so much for the time and trouble of getting this set up - I feel like it's probably one of the most important safeguards we can have as the her2 family, to make sure not one of us or our family will be left alone at the time when help and love are needed most. Thank you from the bottom of my heart - and wallet, I am making another donation!
Love adn Gratitude to you,
Donna
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12-16-2007, 12:04 PM
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#5
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Rhonda,
Yes uncheck it. We will be removing it shortly after I get back from San Antonio.
Donna, Thank you ! ! !
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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12-16-2007, 01:16 PM
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#6
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Oh Yes Joe and Christine.........Thank you, thank you, thank you! This site and it's members mean everything to me. Like Suzane said, our "other" family just doesn't get it. Of course they try.....of course they love us...........but the ALWAYS underlying "what if" is something only we can understand. I know that if I ever have a concern I can bring it here and my "sisters and brothers" will hear it - understand it - and encourage and support me through it.
So thank you "family!" I love you all.
Mary Jo
__________________
"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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12-16-2007, 01:56 PM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Family extends
And Joe thought he only had TWO daughters and ONE wife. Little did he and Christine know ...
At least he doesn't have to keep us all in shoes!!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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12-16-2007, 10:08 PM
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#8
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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I think it's impossible to underestimate how important this family is to me, but I hope you all know. You are in my heart and thoughts every day.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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12-17-2007, 05:18 AM
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#9
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Joe, Christine, and Brenda
Joe,
I opened my email linked to this board this morn after having been away for a while. (end of term madness over these last few weeks) There was several emails from Cure and Heal with updates from the San Antonio Conference. I opened one up and there front and center was a great picture of you, Christine, and Brenda. The familiarity made me feel...connected, and not so alone. It was a remarkable moment.
Thank-you for all that you do.
Terri
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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12-17-2007, 07:54 AM
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#10
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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For those who may have missed it:
www.her2support.org/temp/bh.doc
Regaqrds
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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12-17-2007, 08:13 AM
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#11
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Joe, please put the picture on the web site front page! It is so great to see you three with smiles while hard at work for your "extended family"! How do we thank you and Christine and the Her2 SABCS Gang? Hard to repay the gift of life and hope!
__________________
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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