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02-05-2009, 02:29 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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????Joe...Facebook anyone????
Joe I was wondering if we could add a group for HER2 to Facebook? It's so fun to everyones pix etc. Take care and God bless.
Rhonda
__________________
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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02-05-2009, 04:55 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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That would be fun, good suggestion Rhonda. I joined recently only because a lot of my friends from another site were there. I only get time to say a quick hi to everyone but it's nice to "see" people and get to know them better.
__________________
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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02-05-2009, 05:27 PM
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#3
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Senior Member
Join Date: Aug 2006
Posts: 492
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I would love a her2 facebook group too 
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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02-06-2009, 05:29 AM
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#4
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Like, Tricia, I have moved to using facebook a lot more and connecting with BC friends that way. I would love a spot for Her2+ survivors!
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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02-07-2009, 08:57 AM
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#5
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Senior Member
Join Date: May 2008
Posts: 28
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I also just recently started using Facebook and would love a her2 group!
__________________
Found lump 3/07 at age 44
Surgery: 7/07 rt-MRM, lt-Simple Mast. w/ immediate implants using Alloderm
Tumor: 3 cm., grad III, poorly diff., Stage IIA, IDC, ER/PR-, HER2+++(FISH 3.2) 0/14 nodes
Chemo 8/07-3/08 AC x 6 DD, Taxotere x 12
Herceptin 3/08 weekly for 1 year-done 2/17/09!!!!
Brca 2 +, complete hyst 6/15/2009
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02-07-2009, 09:56 AM
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#6
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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I too am on Facebook.
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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02-07-2009, 01:11 PM
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#7
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Senior Member
Join Date: Jun 2008
Location: NY
Posts: 81
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Yes! i was just thinking of that. I think I'd be a great way to keep in touch and support each other.
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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02-07-2009, 03:53 PM
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#8
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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There is a group on Facebook for Kids Whose Mom has Her-2 Positive Breast Cancer. They discuss how helpful this site is.
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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02-07-2009, 07:53 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Vancouver, BC Canada
Posts: 116
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Facebook legalities
If you start a group on Facebook, don't forget to post a warning for digital neophytes who won't read or understand the ramifications of Facebook's legal fine print that members are required to agree to prior to membership.
Anything that you post to Facebook - photos, confessions, and disease diagnosis - is automatically owned by Facebook. They have the right to republish or sell all of the information that they garner. Being a "closed" group is irrelevant.
Facebook has actually exercised very few of its legal rights with regards to copyright. But that doesn't mean that it can't, or that a different company in the future might not purchase the domain along with it's residual rights with an ambition to monetize the information.
Employers and insurance companies interested in risk profiling not only HER2 people but family members as well would be especially interested in the type of information that would be potentially served up in a HER2 Facebook Group.
Anonymity would be virtually impossible because of the very social and geographical networking facility that makes it popular.
Here is a Reader's Digest version of the personal copyright loss that Facebook membership entails. Please refer to item #4.
http://www.legalandrew.com/2007/07/2...hings-to-know/
Last edited by Merridith; 02-07-2009 at 07:56 PM..
Reason: spelling
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02-08-2009, 09:00 AM
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#10
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Couldn't we just put more information on here? More pictures and information.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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02-08-2009, 12:13 PM
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#11
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Senior Member
Join Date: May 2006
Posts: 3,142
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???Joe...Facebook anyone???
Sorry gals and guys I agree with Merridith and Midwest Alice. I vote "no thank you" to Facebook.
If our gals and guys have Facebook pages, blogs or websites why don't they just include that information in their profiles at our site? Then those of us who wish to visit them at those other places can do that. |
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02-08-2009, 12:18 PM
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#12
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Better link
Hi -
Merrideth's link went to the home page for Andrew's law, here is the one for Facebook:
http://www.legalandrew.com/2007/07/2...hings-to-know/
There is also a BIG Term of Service that says each account is SUPPOSED to be tied to an individual and not a group.
So, I am wondering how we would get around that one.
Personally I prefer to stay with this site - not so public ...
__________________
"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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02-08-2009, 12:26 PM
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#13
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Senior Member
Join Date: May 2006
Posts: 3,142
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????Joe...Facebook anyone???
Wow Steph,
Thanks for posting that link. I for one wish to remain relatively private about my personal business and I don't want anyone or any company having rights to my private or medical information.
We sign all those privacy act things in doctor's offices and hospitals yet some of us are willing to just put all our stuff out there for the whole world to see and know.
Our site is much more private and I appreciate that very much.
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02-08-2009, 12:42 PM
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#14
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Im with Elaine, Alice, Steph, etc. I think sticking with this site would be great. Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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02-08-2009, 04:52 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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I was only thinking that...
we could call it HER2 or something silly if we want to keep from disclosing dx. I was just thinking it would be fun to see OTHER aspects of our lives (outside of cancer). I have NEVER discussed my dx on there (nor any other info I don't want disclosed). I just like to go on there to visit with old friends, see family pix, interests etc.
__________________
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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02-08-2009, 05:41 PM
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#16
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Senior Member
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
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Hi Rhonda,
I am on facebook and would love to have you as a friend. There are some other girls from this site on also and it is neat to get to know each other in other ways. The YSC group that I am part of here in Savannah is on the site as a group and it really works well. I'll have to ask my friend how she set it up.
Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED
"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."
-Eleanor Roosevelt
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02-08-2009, 05:58 PM
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#17
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Hi Rhonda,
I have a feeling that those who are fearful of Facebook don't really know how the site works. I joined a few months ago because my daughter lives in Texas and sometimes I can log on just to "see" what she is doing. She posts the most random things -"drinking coffee", "going for a run" - nothing earth shattering or damaging. It's fun and it keeps me even more up to date with her between our frequent phone calls. If we get a group going I will probably join.
__________________
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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02-08-2009, 10:23 PM
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#18
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Kelly A...
Good to see you. Remember me? You and I compared notes about a year and a half ago. I am doing great and hope you are too. I am really sort of a lurker now. I somehow do not seem to find the time to post much anymore. However, I still consider all my friends on the Her2 site to be the most awesome people I know. I treasure the site, even though I do not post much.
All the best,
Catherine in Oregon
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
Last edited by Catherine; 02-08-2009 at 10:26 PM..
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02-09-2009, 01:48 AM
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#19
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Senior Member
Join Date: Sep 2005
Location: Vancouver, BC Canada
Posts: 116
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Mmmmm. I don't really agree with Gerri that fear of Facebook or ignorance of how the site works was a motivator for my cautionary post.
I too am a Facebook user and consider myself a fairly high-end digital consumer.
But I would urge the people setting up this group to very carefully consider the possibility of the future potential risk with regards to health insurance access and employment discrimination that the members of a HER2 group would be accepting and complicit in encouraging.
For the sake of debate - how about looking at other types of social networking that are less exposed to commercial exploitation?
One possibility which might appeal to you that could be used in conjunction with this current site is a downloadable tool which gives users the ability to "see" each other in real time when they are simultaneously surfing any website & converse with each other. An example of which is here http://www.rocketon.com/a/index.php. (I haven't researched this example - but there are other analogous choices out there)
Another possibility would be a group membership at Second Life. This is one of the biggest, fastest-growing avatar based virtual reality worlds on the internet. Universities offering classes, banks, law firms and Reuters news wire all have virtual bases in this world. A base can be set up so that membership can be either "open" or "invitation only" http://secondlife.com/whatis/
Another possibility is Twitter - I think Tweets can be anonymized more effectively than Facebook membership.
Last edited by Merridith; 02-09-2009 at 02:05 AM..
Reason: additional information
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02-09-2009, 08:56 PM
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#20
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Senior Member
Join Date: May 2006
Posts: 144
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That certainly is an eye-opener about Facebook.
That said, I do have an account and have friended several Her2 members.
It's nice to share photos that way.
There are other groups on FB like Susan B. Komen, so I wonder how they get around the individual thing.
- Anna
on FB at http://www.facebook.com/people/Anna-Fang/632381336
__________________
- Anna
Stage I - DX 9/2005 ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis - start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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