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08-28-2010, 11:34 AM
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#1
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Member
Join Date: Apr 2010
Posts: 17
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About Our Wonderful HER2 Support Community -- Where We're Going From Here
Hi, everybody. First off, thank you so much for all of the kind thoughts and prayers, and all of the lovely words you shared with us both here on the website and in his service's guestbook. I know many of you weren't able to attend, but just know that this group's outpouring of love was very much a presence when we laid him to rest last week. It's a very, very sad time for me, my mom, and sister, but with your support, we're given a reminder of just how much he was able to change the world that surrounds us. He was able to achieve so much. He lived a life I know he's proud of.
HER2support.org isn't going anywhere. My mother (a.k.a the founder of this group, Christine) has been actively corresponding with several of those on the board of directors to figure out who would be able to manage the site's 'inner workings'. We still plan on having some of us attend the San Antonio Breast Cancer Symposium this year, and I know she's been talking about hosting some sort of teleconference with both the board and those of you interested in getting more involved concerning our next decisions as an organization. But those of you that were nervous that this is the end of HER2 Support Group, just know that Daddy always told me that it was all of YOU that kept this website going. Continuing to share your stories and reach out to support the others that come to this site is very much the fuel and heart of this group, and so long as we have that, I guarantee we'll be here to make sure this site keeps running.
Big hugs,
Danielle (and Christine!!)
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08-28-2010, 12:21 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Dear Danielle,
Thank you so much for your commitment to this site. I am about to celebrate 5 years out from her2+ bc and I have learned so much valuable information thanks to your wonderful mom and dad.
I can't imagine her2support not being available to those of us with the disease. The knowledge that we learn he is invaluable.
Thank you, thank you!
Lexi
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08-28-2010, 01:31 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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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thank you for the update Danielle, and I'm relieved to know we can all remain connected here and for the many newer members who need info on this type of bc.
My best wishes to you all as you go forward. xx
__________________
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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08-28-2010, 04:00 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thank you Danielle. I am very happy to hear that you and your Mom are working to ensure that this site continues. We appreciate your efforts very much.
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08-28-2010, 05:28 PM
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#5
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Member
Join Date: Oct 2006
Location: Victoria, BC - Canada
Posts: 21
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Danielle, my condolences to you and your family! It is such sad news to read. Your dad was the first to respond to my first post 4 years ago. I found his empathy comforting and the information he provided to me most welcome and useful.
Blessings to you all.
__________________
Gayle
_____________
Live Strong
IBC dx August 9/06
ER/PR +2
HER2/neu +
chemo August 11/06 - January 8/07
herceptin - 17 treatments, every 3 wks - end Jan 2008
IMRT rads 5 weeks
surgery May 1/07 bilateral mastectomy (left modified radical, right simple)
prophylactic bilateral salpingo-oophorectomy March 2008
letrozole, 2.5 mg daily, start June 2008
lymphedema, left arm, April 2008
osteoporosis, lower spine, August 2010 - fosamax 70 mg
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08-28-2010, 05:37 PM
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#6
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thank you for taking the time to reassure us in the middle of all you are going through. It runs in the family.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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08-28-2010, 05:54 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thank you for your commitment to continuing this site. It means a true life line to so many of us, I don't know what I'd do without it,n Joe will be so proud of your work.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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08-28-2010, 06:02 PM
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#8
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Danielle,
Thanks for the info. Wanted to ask but was hoping someone would say.
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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08-28-2010, 06:41 PM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Very awesome news. Thank you so much for everything.
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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08-28-2010, 07:08 PM
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#10
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thank you so much for your post. I just know your Dad is smiling down on you.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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08-28-2010, 07:53 PM
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#11
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Senior Member
Join Date: May 2009
Posts: 510
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thank you so much for your commitment to
this site and our community! I'd be happy to help
in any way to keep the site going.
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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08-28-2010, 09:03 PM
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#12
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thanks so much for posting Danielle, especially during this very difficult time for your family.
Philanthropy certainly runs in the family.
all the best
caya
__________________
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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08-29-2010, 06:17 AM
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#13
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Dear Danielle and Christine,
Your generosity of spirit is unbelievable!!! Thank you so much for thinking of us during this very difficult time. I am amazed by your emotional strength to reach out and think of others.
Selfishly, I am relieved that you are thinking of the site and keeping it going. It has been an absolute lifeline for SOOO Many.
The site and all of the great information posted here has been "magic".
I am not certain how to help but would love to do so. PLEASE just let us know how we can help carry the load.
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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08-29-2010, 09:04 AM
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#14
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Danielle;
Thank you for continuing this wonderful site and seeing your Dad's legacy live on. This has been nothing short of a miracle for me. I would be honored to help in any way I can to help keep this site supported.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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08-29-2010, 11:08 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Hello Danielle,
Thank you for your post and update and continued commitment to this invaluable site. I certainly would have had not only a more difficult time with my HER2 but less comfort.
Although I live in France and I am not that great at understanding medical lingo, I am of course, like so many other members, willing to help in any way I can.
I am part of a cancer support group here in the south of France and have introduced our HER2 patients to your site.
We will miss your dad greatly and admire your courage and commitment; you are definitely Joe and Christine's daughter and I offer my love and condolences.
love Sarah
(33) 494 39 08 54
__________________
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08-29-2010, 11:19 AM
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#16
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Such a welcoming news! Thanks for the reassurance.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 08-30-2010 at 09:14 AM..
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08-29-2010, 02:40 PM
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#17
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Thank you Danielle, and your Mom & sister, for remembering us and the Her2support site during this difficult time. Your father was an amazing man and it's obvious that his genes live on through you.
If there is anything I can do to make these hard times easier for you, please let me know. Although I live in the Netherlands, Europe, there are certainly things that can be done online. Don't hesitate to ask!
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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08-29-2010, 06:55 PM
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#18
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Danielle, I appreciate how much you and your family has dedicated your time and efforts for this website. It has meant so much to me. Thank you.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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08-30-2010, 09:12 AM
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#19
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
I am so happy to hear the Her2 board will continue. I still check back now and then as am trying to stay up to date with the latest information regarding the Her2 treatments.
I really appreciate Christine and Joe for all they accomplished with this board. I gained tremendous amounts of information that helped me make the difficult decisions regarding my treatment. If I ever have a reocurrence it is great to know everyone is still here to help guide me in the best direction.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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08-30-2010, 07:23 PM
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#20
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: About Our Wonderful HER2 Support Community -- Where We're Going From Here
Many heartfelt thanks for your family's dedication to this site. It has meant so much to so many. I am truly grateful to you all and miss knowing Joe is watching over what we post. He was wonderfully fair and so knowledgeable.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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