HER2 Support Group Forums - View Single Post

StephN · 04-18-2010, 11:18 PM

Don't be shy.

Joe posted a sticky titled "We Need Your Help."

I think there is an exciting opportunity for the members here to think about and express what we individuals have gained by visiting and interacting here.

The operative words in Joe's message repeated below for me is "impact of our organization."

It was Christine's idea to get this up and running, but not everyone has had direct contact with her. We have had plenty of contact and interpersonal relationships with others here that would be important in giving the whole picture of what has been accomplished by this web site.

Finding so many others who care so much about total strangers brings out the inate good in people.

"Last year, we received a grant to put Christine's personal story and the impact of our organization into writing.

Our writer is looking for anecdotes about Christine and the HER2 Support Group to include in the book.

Please send to: ctaghdiri@yahoo.com

Thank you all,

Joe"

04-18-2010, 11:18 PM	#1
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	What does this site mean to you? Don't be shy. Joe posted a sticky titled "We Need Your Help." I think there is an exciting opportunity for the members here to think about and express what we individuals have gained by visiting and interacting here. The operative words in Joe's message repeated below for me is "impact of our organization." It was Christine's idea to get this up and running, but not everyone has had direct contact with her. We have had plenty of contact and interpersonal relationships with others here that would be important in giving the whole picture of what has been accomplished by this web site. Finding so many others who care so much about total strangers brings out the inate good in people. "Last year, we received a grant to put Christine's personal story and the impact of our organization into writing. Our writer is looking for anecdotes about Christine and the HER2 Support Group to include in the book. Please send to: ctaghdiri@yahoo.com Thank you all, Joe" __________________ "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.