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07-10-2009, 05:53 AM
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#21
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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I would also be glad to do a survey.
__________________
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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07-10-2009, 10:26 AM
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#22
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Senior Member
Join Date: Jan 2007
Posts: 368
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I will participate too.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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07-10-2009, 01:32 PM
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#23
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Yes, if it is to further BC advocacy, treatment, research, etc. I am all for it!
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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07-10-2009, 06:27 PM
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#24
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Senior Member
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
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I am happy to support this effort and participate---let me know
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED
12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line
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07-12-2009, 07:25 AM
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#25
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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It sounds like there is much interest in responding to surveys, etc. that are designed to help learn more and better treat our disease (rather than surveys related to any kind of marketing). Any research coming out of a major organization where research is routinely conducted (e.g., university, medical school, hospital, etc.) would be required to go through an extensive review from the home organization's Institutional Review Board (IRB). Approval from such a board is really a necessity for moving ahead with research at major organizations. At my university, for example, we can not so much as collect interview data from participants without going through the IRB and gaining approval. So, if someone approaches our group, our webmaster or someone from our board should be able to find out if the research has been sanctioned by the organization's IRB (and perhaps check that directly with one phone call). We want to be able to support research that has been scrutinized carefully for ethical considerations but probably not support research that has not been examined internally as to purpose/ethics, etc.
karen
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