 |
04-08-2008, 11:04 PM
|
#1
|
|
Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
|
Important HER2 Survey
Help us develop a new and innovative website for breast cancer patients.
Your opinion matters!
Click here to take a survey about your experiences living with HER2-positive breast cancer.
Alternate link: http://surveys.globalepanel.com/wix/p142869359.aspx
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
|
|
|
|
04-08-2008, 11:36 PM
|
#2
|
|
Senior Member
Join Date: Apr 2006
Posts: 148
|
I was filling this in until I came to the question about household income - I never divulge that - to anyone!
Mcgle (UK)
|
|
|
|
|
04-09-2008, 03:56 AM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
It didn't open for me
|
|
|
|
|
04-09-2008, 04:54 AM
|
#4
|
|
Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
|
The site "couldn't be found" when I clicked on it.
Mary Jo
Oops - second time I clicked it opened. So I took the survey.
__________________
"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
|
|
|
|
|
04-09-2008, 05:06 AM
|
#5
|
|
Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
|
Hi Joe,
I started the survey and then after doing 2 pages and clicking on next the "could not be found" page came up again. So, I tried going back and doing it again but "page could not be found" came back.
So, sorry, I tried taking it but something is wrong with the link. Let us know when it's taken care of and I'll be happy to take the survey.
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
|
|
|
|
|
04-09-2008, 08:17 AM
|
#6
|
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
Joe
I took it, had no problems/ it took about 8 minutes.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
|
|
|
|
|
04-09-2008, 10:04 AM
|
#7
|
|
Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
|
Hi Joe! I had to start over one time, but then it went really fast.
Are they working on making more of the drugs available to take orally?
ma
__________________
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!
|
|
|
|
|
04-09-2008, 01:57 PM
|
#8
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
I got through about 5 questions and then it went to an "error" page and I tried going back and it wouldn't let me. I then tried hitting "refresh" but that did not work. So I figured I would start all over again but it wouldn't let me. I'll try again later...
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.
|
|
|
|
|
04-09-2008, 05:38 PM
|
#9
|
|
Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
|
I took it and didn't have any problems with it. Only took about 10 minutes.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
|
|
|
|
|
04-09-2008, 08:27 PM
|
#10
|
|
Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
|
Joe,
I had no problem answering the survey. Thanks,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
|
|
|
|
|
04-10-2008, 11:16 AM
|
#11
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
I took the survey but some things didn't apply to my situation and there wasn't a choice that fit, so I just had to chose something. I retired when I was diagnosed - lost the energy and physical capacity to continue in my work. still hope it's helpful. will I be inandated with commercial offers?
Love your site. Couldn't live without it.
|
|
|
|
|
04-10-2008, 12:31 PM
|
#12
|
|
Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
|
No offers. All replies are anonymous.
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
|
|
|
|
|
04-10-2008, 04:13 PM
|
#13
|
|
Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
|
I took the survey, no problem!
Thanks Joe
|
|
|
|
|
04-10-2008, 06:11 PM
|
#14
|
|
Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
|
I had the same experience as Chelee. I will try again!
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
|
|
|
|
|
04-21-2008, 11:40 AM
|
#15
|
|
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
|
I Did It!
ALWAYS HAPPY TO HELP. JUST NEED SOME TIME TO FIND SOME TIME...
Been working. On my book. Quite the undertaking.
Andi
__________________
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...
|
|
|
|
|
04-24-2008, 12:48 PM
|
#16
|
|
Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
|
Not Applicable
The survey worked for me and I even had to run a 1/2 hour errand in the middle of it, but it worked fine.
I thought it needed an answer of "not applicable" for some of the questions as I was forced to give an answer of some kind, that wasn't really my situation.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 10:13 PM.
|
Linear Mode
