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11-10-2007, 12:56 PM
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#1
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Yes, I think I should also reconsider using my real name and removing my pic also. I think it is nice "seeing" who you are communicating with and I have made some wonderful contacts through this site that have helped me more then anything through my ordeal esp with chemo. I got use to signing off with my real name because it just felt like the right thing to do, but I need to reconsider.
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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11-10-2007, 01:18 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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I Am Shocked. Naive Perhaps. But Shocked...
Oh Maryanne! That is initially alarming. Not that I don't stand behind all that I have ever posted, but it was for Sisters and Bros only. What was it you were googling? Just curious... Want to see if I can find myself!
I have a new name picked out. I may consider posting a pic of me in a birkha, w/only my eyes showing, sitting cross legged and totally out of sight. (I once saw a Muslim woman on television who looked exactly like that. She was seated beside her lawyer. She did not speak. She was suing the state of Florida for denying that picture of her as identification on her driver's license! The sight was absurd. Yet real.)
Madam X
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-10-2007, 01:41 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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The two that I know showed up on a search engine would be the thread where this person was looking for an oncologist which I had responded to and the other one was the PMPS (post mastectomy pain syndrome) thread. My friend had googled PMPS and my message on that thread showed up, picture and all. She was so surprised!! Then another time she googled the name of her doctor because she likes to check periodicaly to see if there is anything new under his name and again my entire post came up because I had mentioned his name.
If you would like to ck this out for yourself, go to google, type in POST MASTECTOMY PAIN SYNDROME, then go to page 2 of the listings and you will find it.
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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11-10-2007, 02:16 PM
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#4
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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google
Madam X
If you Google Andi BB you will get your recipe for cranberry relish.
If you Google Andrea Barnett Budin you will get the "Gaining Control"
thread and the "Vit H, CHO" thread.
There was talk about this awhile back. Some gasped and some already
knew about it.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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11-10-2007, 02:39 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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I Never Knew That!
Don't know where I was that day, Pinkie, but today -- I am here! AND I AM GASPING!! Too bizarre!
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-10-2007, 03:21 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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I found out about this over a yr ago when I was googling something. I found many of my posts from the her2 board and the breastcancer.org board. I am uncomfortable with just anyone finding my posts & that is the main reason I will not put up an avatar or use my real name. (Although, I wish that I could.) Its nice to put a name with a face together. 
I've had too many problems at the cancer center I go too and didn't like the idea of *them* finding, & seeing what I post...so therefore I remain to all as Chelee. (Of course, not my real name.) As far as I know there is no way around this other then to make a board totally private by invite only. Which would be sad to do because this board is so important to someone that's just been DX her2/neu and is scared to death needing information. There is no other board that comes close to this for her2 as everyone here knows. I can't imagine what would of happened to me had I not ran across this board. (I don't want to even think about it!) You can't get this kind of information anywhere else so for now the only thing to do if you don't want people to run into your posts via google or other search engines is to change your name and remove your avatar.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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11-13-2007, 03:57 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 221
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There is some way to hide email lists so they do not appear in google searches. The bclist.org posts can be read at the archive site, but a google search does not bring them up, like it does for the discussions posted here. I don't know enough about it to understand if that's a possibility for what's posted here. Maybe it's different because this is a board and not a list? Joe?
I agree with sunshine/Andrea - I like to see people's names. Posts signed with names seem more genuine and sincere - more accountable. I don't know why that's so, but that's how it seems to me.
Debbie Laxague
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11-13-2007, 11:23 PM
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#8
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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It doesn't "bother" me per se that my posts may show up in search engines, but I believe it is definitely good to know of the possibility. Because, for example, what is someone just needed to post a complaint about their oncologist to get it off their chest or wanting an opinion for our group, and for some reason they mentioned the name of the person they are complaining about. That post will probably show up if you google the name of that doctor. A simple slip can open up a whole lot of "rubbish" hitting the fan if you know what I mean.
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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