HER2 Support Group Forums - View Single Post - Patient-centered HER2 bc project

StephN · 11-15-2007, 05:21 AM

Dear AA -
Was out of the loop with my own grieving when this discussion took place. Let's see where we can go with getting someone interested in using our blood or tissue. Maybe this idea can be taken to San Antonio in a month and some interest drummed up there.??

Terribly sorry about your friend and "our" BC sister losing her life to this durned disease.

The trial you gave the link to is at Georgetown, a long way from most of us. Here is a bit from it for those who may know anyone in that vicinity who fits this description:

This is a registry for patients who have a risk-reduction mastectomy ("prophylactic mastectomy") due to being at high risk for developing breast cancer, followed by breast reconstruction. Eligible patients include those who have a breast cancer-related gene, a strong family history of breast cancer, or a personal history of high-risk conditions such as cancer in the other breast or ductal carcinoma in situ (DCIS). Patients are enrolled in the registry before surgery, and are followed for up to ten years afterwards

11-15-2007, 05:21 AM	#3
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear AA - Was out of the loop with my own grieving when this discussion took place. Let's see where we can go with getting someone interested in using our blood or tissue. Maybe this idea can be taken to San Antonio in a month and some interest drummed up there.?? Terribly sorry about your friend and "our" BC sister losing her life to this durned disease. The trial you gave the link to is at Georgetown, a long way from most of us. Here is a bit from it for those who may know anyone in that vicinity who fits this description: This is a registry for patients who have a risk-reduction mastectomy ("prophylactic mastectomy") due to being at high risk for developing breast cancer, followed by breast reconstruction. Eligible patients include those who have a breast cancer-related gene, a strong family history of breast cancer, or a personal history of high-risk conditions such as cancer in the other breast or ductal carcinoma in situ (DCIS). Patients are enrolled in the registry before surgery, and are followed for up to ten years afterwards __________________ "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.