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02-09-2009, 09:26 PM
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#21
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Senior Member
Join Date: May 2006
Posts: 3,142
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???Joe...Facebook anyone???
I am not fearful of Facebook. I am selective.
I am a pretty private person. One cannot be too careful about "what's out there" for the whole world to see and use. I don't want a site like Facebook to have rights to my information.
I don't even click on forwarded messages my friends and relatives send me. I just delete them unopened and
move on to real e-mails from real people bringing me news and friendship.
I also think having one meeting place like we do here is better than having two meeting places. I like our her2support.org site and probably wouldn't visit Facebook anyway.
I would like to suggest that our friends who have Facebook sites, websites or blogs and want visitors from our site feel free to put your contact information in your profile, so thoe who from our site who wish to visit you at other places on the internet can do that.
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02-09-2009, 09:34 PM
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#22
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Senior Member
Join Date: Oct 2005
Posts: 823
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I like this site here just fine for me. I will not ever join a FaceBook, My Space or any other thing like that, as too many things can happen. Yep call me a chicken, but I have heard way too many stories.
__________________
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
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02-09-2009, 09:58 PM
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#23
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Senior Member
Join Date: Jul 2006
Posts: 463
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I am on facebook, too, for just few weeks now. Most of it doesn't impress me much - lots of idle chatter. But the sharing of photos is a LOT of fun. I really enjoy this way of connecting a little more with distant (in every meaning of that word) family members and email friends. For example, my husband has a large family and we don't live close - if not for the young cousins sharing photos, we'd never see their kids. Even my own kids, who I see and/or talk to on the phone all the time - on facebook I can play scrabble or have a quick chat with them. Or get glimpse into their network of friends. I began as a total skeptic about facebook but have been sucked in. I do warn you that some of the games are highly addictive. Word Challenge, Tetris - do not go there unless you have lots of time to waste (smile).
If we had facebook connections among HER2 group members just for sharing photos, I think that it could enhance our togetherness on this site. It would be a way to welcome all who are interested, without the "clique-y" feel of private posts and private photo sharing. It would of course, be totally voluntary - no one with concerns about privacy or anything else would have to participate. The only thing we'd want to be sure of is that we keep the conversations right here, as they've always been.
Joe, what do you think?
Debbie Laxague
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02-09-2009, 11:34 PM
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#24
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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We DO have a GALLERY space on this web site for posting photos. It used to be used more till the site underwent an upgrade.
See the yellow bar above that starts with "HOME" and Gallery is the 4th choice from the left.
There was a way for members to have an "album" before, but I have not looked at this new version closely.
I think we could make fuller use of this site, share and have a little more privacy.
Personally, I don't really have time to go to many other web sites.
__________________
"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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02-10-2009, 08:53 PM
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#25
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Senior Member
Join Date: May 2006
Posts: 3,142
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????Joe...Facebook anyone
I like your thoughts StephN. |
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02-10-2009, 09:05 PM
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#26
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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This may be one of the projects that the advisory group may wish to address. Other alternatives may be a "blog" or a fliker account.
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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02-20-2009, 11:49 AM
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#28
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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I found a program which may work in lieu of Facebook.
Here is a sample website: http://www.sustainabilityforum.com/forum/#
Look at the bottom of the page and also click on "Chatroom" on the navigation bar.
Pros:
You can delete your own posts
No need to reregister, if you are already registered on the forums.
As anynomous as your present registration.
Cons:
Cannot upload photos..We will have a new photo album on our renovated website.
Let me know if this program will work.
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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02-20-2009, 03:11 PM
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#29
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Joe...
Actually, I LIKE that forum as it is similar to the one for Frugal Village and we can do a lot of fun things with it. Thanks for checking into something. Take care and God bless.
__________________
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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02-21-2009, 11:12 AM
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#30
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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I really need some feedback on this.
SAMPLE FORUM
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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02-21-2009, 11:21 AM
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#31
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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Joe, I am wondering why we need another site. Is it so that we will have a more social space? I would not want to lose the sense of camaraderie that we have here or take away from this in any way. So many of the sites are more focused on making conversation but this one is so educational and supportive. Would another site dilute that? Just wondering,
Leslie
__________________
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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02-21-2009, 12:26 PM
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#32
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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The chatspace would become an integral part of our current message boards.
I agree, I really do not wish to go outside our organization.
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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02-21-2009, 02:38 PM
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#33
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Senior Member
Join Date: Jul 2006
Posts: 463
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Sorry not to reply initially. It seemed like you were showing us a chat space and I'm not interested in that so I didn't have anything to say.
What I like about facebook is being able to see everyone's photos - their families and their interests and where they live, for example. If the new website is going to have that, then to me there's no reason to do anything else. I did look at the gallery on this site (I'd never noticed it was a choice - it's hard enough to keep up with just this one section!). It didn't seem like we were using it much.
Thanks for working on this, Joe.
Debbie Laxague
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02-21-2009, 07:07 PM
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#34
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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I would prefer to use this wonderful website, expand/upgrade it etc. for pictures, blogs, etc. if members wish to do that. Since Joe is planning on renovations, why not keep this in mind?
I also agree with StephN - we can make fuller use of this site etc. and maintain some privacy. I also would prefer not to go to yet another website.
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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02-21-2009, 09:09 PM
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#35
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Senior Member
Join Date: May 2006
Posts: 3,142
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????Joe...Facebook anyone????
I am happy with what we have here. I don't want to go anywhere else. It is the best breast cancer group on the net. It is informative. We can learn alot and find resources. We can form friendships and support or help each other in whatever is going on with out health. I don't need to see photos or other things. Maybe just add a working chat with more options for those who want to chat. Those who want more photos can help you expand the community part of this website if you think that is a good idea.
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02-21-2009, 09:21 PM
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#36
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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I'm with Elain, Stph N , Caya. I don't need more photos, just the wonderful support of those here at this site. Maybe it's because i'm somewhat computer illiterate, but this site is enough for me. Thanks for all the input and suggeations. Just offering you one more....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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02-21-2009, 11:15 PM
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#37
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Senior Member
Join Date: Sep 2005
Location: Vancouver, BC Canada
Posts: 116
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My vote is to stay here with this site. I didn't see any significant advantage to moving to this new site.
But I could envision the technical hassles of moving all our archived historical material over there.....
Not worth it.
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02-22-2009, 08:36 AM
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#38
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Joe--another thought on facebook
I use Facebook and like it for many reasons. However I agree that specific and personal information belongs here on a site like this. I don't thin another site is needed.
However, with that said, I think Facebook might be a great way to help thers find us on this site. If Joe thinks this would work, I'd be happy to set up a group on Facebook for us. It would be something like this:
* purpose would be to support the her2 BC cause.
* include a brief decription of her2
* This site would be listed -- to inform people about it, and then they'd have to join just as anyone would if they found us through other channels.
No duplication or content or anything that duplicates what's on this site. Keep it very simple...use it as more of a "marketing" tool to help interested Her2 people to find this site.
A separate idea is to create a field in our profile on this site to list our individual Facebook link. Then users on this site who would like to be a friend of ours on FB could find us easily.
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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02-22-2009, 01:02 PM
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#39
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Senior Member
Join Date: May 2006
Posts: 3,142
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????Joe....Facebook anyone????
Let's not create more work for Joe, Christine and their helpers (if they have them). Let's have this and let's have that translates into alot more technical work for the webmasters.
I am happy and thankful for what Joe, Christine and their helpers have provided here. I don't need anything else.
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02-25-2009, 08:10 AM
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#40
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Senior Member
Join Date: Nov 2006
Location: South Carolina
Posts: 183
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Facebook
I just joined facebook and find it a great tool in keeping up with friends and family.
I was just introduced to a game called Prolific which is a game like Boggle. I think it is helping me somewhat with my chemo brain or at least making my brain work more while trying to figure words out. I invite you all to try it. Go to the search button and type Prolific. There are people world wide playing. To me it is a fun way on making my brain work.
__________________
Anita
er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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