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12-28-2007, 07:36 PM
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#1
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Have you been asked to take a survey?
I received an email saying I was chosen to participate in a survey regarding my opinion on HER2 research. Millwood Brown is conducting some marketing research on behalf of a biotech company it seems. Anyone know any more about it before I respond? I don't know where they got my name. Except from the Herceptin company. I signed up for literature from them....
__________________
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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12-28-2007, 08:00 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Bonnie, I received this same email. I'm not sure where they got my name either? I have signed up on the herceptin website and they sent me all kinds of information once along with a tote bag, etc. I'm thinking I might of agreed to participate at the time I gave them all my information?
I have never heard of Millward Brown...but I did read their privacy policy at the bottom of the email and I see their in Austin, TX and they DO have a 800# to call & a regular phone number if you have any questions. They promise not to share your information, ect. So it looks like its safe.
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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12-28-2007, 10:23 PM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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well, I went back to resume the survey thinking I would see where it was going. But I was notified that I had interrupted it the first time and was therefore inelegible to take it now! So it took care of itself!
__________________
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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12-28-2007, 10:45 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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I'm glad you told me that as I haven't taken the survey yet but I do intend too. I will make sure once I start I don't stop. I hate that when you invest time into something like that and it won't let you finish...how frustrating to say the least. Sorry that happened to you...but thanks for letting me know what happens if stop or take a break. The survey warns you that it will take up to 30 minutes...so you would think they would take that into consideration that someone MIGHT want a break. What happens if the phone rings, or you need to use the restroom...that's not right. Well...its *their* loss...now they don't have your vauable information. Again...thanks for the warning.
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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12-28-2007, 10:52 PM
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#5
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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well there is some verbage about phone numbers I can call if I wish to get back on the survey list. I just wish it had begun with more explaination of what they were about and who it represented. I want to participate if it would be helpful. Let me know how it goes...
__________________
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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12-29-2007, 11:45 AM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I got the same survey, alot about Herceptin vs Tykerb...so I would say it will be for marketing purposes for one or the other...they want to know about ypur cancer and about what you know about these 2 drugs.
__________________
"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
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12-30-2007, 12:20 AM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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I just took that survey. They said it will take about 30 minutes. It took a one hour and 36 minutes of my time....that's a bit too much and I let them know that. I don't mind helping when I can...but that went on far to long.
Sheila, I wonder if its exactly the same for each person because it did ask me about Herceptin & Tykerb towards the very end of the survey. But the first part of it went on and on about how involved was I in the treatment decisions? Was I informed about all the side affects and made aware of each drug I would be taking, etc. Do I feel going for my cancer treatments interfered with my every day life? Did having cancer keep me from doing things that I would of gotten to do had I never been DX with it. How many times were my treatments changed and how involved was I in those decisions? Do I trust what my oncologists advice on what medications to take? Do I follow through on medications I'm given or does the quality of life issue make me quit taking the medications I'm prescribed? Where do I find MOST of my information on HER2 cancer which gave me box after box to check. Each question would have a "Check all that apply" type of deal. Where do I find support...then again, "Check all that apply". How many opinions did I get when DX? How many oncologist have I've seen since I was DX? I could go on for days! lol
The questions were endless! I didn't think it was ever going to end...just ridiculous! I've taken alot of surveys online over the last 15 years...but this one was extremly LONG!!! It wasn't till the very end it asked about Herceptin and Tykerb. If your reading this Bonnie...you just saved yourself a GOOD hour plus of free time. 
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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12-30-2007, 08:02 AM
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#8
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Chelee, wow, I am so glad I read your experience before I went looking for the survey again! That really does seem like an imposition without even much explaination from them as to how the information is going to be used.
Another example of how we help each other out here on this board, in all kinds of ways! Thanks!
Bonnie
__________________
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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12-31-2007, 10:58 AM
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#9
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Senior Member
Join Date: Oct 2007
Location: PA
Posts: 27
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I got the survey request as well but have not responded yet.
__________________
diagnosed 1/07;
ER+, PR+, HER-2 +;
4.2 cm. invasive ductal carcinoma;
mastectomy 2/07;
SNB negative :-) ;
chemo (AC, followed by Taxol); herceptin scheduled until 6/08 but stopped 11/07 due to LVEF drop)
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12-31-2007, 04:02 PM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Bonnie, I don't think I would of minded the amount of time so much IF they had at least warned me that it could take 30 minutes UP to an hour...something like that. Had I known it was 90 minutes I would of taken it when I had a little more free time. Once I had so much time invested in the survey..I didn't want to just quit so I choose to finish it. Just make sure you have time set aside if you decide to do it...then it won't be so bad.
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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12-31-2007, 04:57 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I recevied the survey and took it. As Sheila said it's strictly for HER2 breast cancer and asks a lot of questions about Herceptin and Tykerb. I receive a lot of requests for surveys but the ones I like best are the ones I get paid for taking.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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01-04-2008, 01:02 AM
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#12
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Hi Kate, It sounds like the survey was tailored differently depending on how one replies to the questions as you go along? I was asked about Tykerb and herceptin as you & Shelia mentioned...but only a few questions towards the very end of the survey?
You mentioned you liked taking surveys that pay you for your time. I got a survey once that said it was going to pay me $20.00 for my time to take the survey. I filled out all my information and took the survey and I NEVER received a dime for it. I would of taken it without the $20.00...they said it would take up to 6 wks to receive a check which I never got. By then I had deleted the email so had no way to contact these people. O'well. At least that one was semi short and not so time consuming.
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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01-04-2008, 06:40 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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I answered questions for about 5 minutes and it stopped me from continuing. The message said it was not necessary for me to complete the survey.
__________________
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.
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01-04-2008, 07:03 PM
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#14
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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I didn't get this survey, but I've done several before. I did get a check for $50 once for completing a survey. This past fall, I got invited to participate in a focus group. I did have to drive a bit, but it was well worth it. It was all marketing questions about genetic testing and took an hour. As I walked out, they handed me a $200 in cash and donated $100 in my name to the Susan G. Koman Foundation. Pretty cool....
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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