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StephN · 01-17-2008, 12:35 PM

Dear "advocate" -
Thanks for appearing here and telling what you can of your family's story.

In order to move ahead with what should be better, more effective cancer treatments someone must step forward and try the new drugs. You don't say what other options were presented to your Mom, but she seemed to go with this as giving her the best chance. She was extrememly BRAVE to go out on that limb.

In order to take a trial drug we must sign an Informed Consent form, so you should have a copy of that around. This form covers the medical center and doctors unless something very important that can be proven they knew is left out.

Ixempra is still in trial phase, so not everything is known that can happen to the patients. I have taken part in several clinical trials that had good results for me. But I knew there was NO guarantee of anything, and that I was basically signing on as a Lab Rat with long legs and no tail.

My father passed away this past November and I am still reeling with the effects of his several month acute illness and how much I miss him. In other words I feel your pain of loss of a close parent that meant the world to you.

01-17-2008, 12:35 PM	#15
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Brave woman Dear "advocate" - Thanks for appearing here and telling what you can of your family's story. In order to move ahead with what should be better, more effective cancer treatments someone must step forward and try the new drugs. You don't say what other options were presented to your Mom, but she seemed to go with this as giving her the best chance. She was extrememly BRAVE to go out on that limb. In order to take a trial drug we must sign an Informed Consent form, so you should have a copy of that around. This form covers the medical center and doctors unless something very important that can be proven they knew is left out. Ixempra is still in trial phase, so not everything is known that can happen to the patients. I have taken part in several clinical trials that had good results for me. But I knew there was NO guarantee of anything, and that I was basically signing on as a Lab Rat with long legs and no tail. My father passed away this past November and I am still reeling with the effects of his several month acute illness and how much I miss him. In other words I feel your pain of loss of a close parent that meant the world to you. __________________ "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.