HER2 Support Group Forums - View Single Post - My Update on 09-093 Trial

StephN · 12-22-2012, 11:03 AM

Dear Karen -
WOW - NED, NED and NED again. Love to see that.
I seem to not understand which drugs, if any, you are taking now. Anything?

That clot experience sounds very worrying! It is indeed a miracle that it unknotted itself and normalized.

At SABCS there were a couple of forums on clinical trials. Not any trial in particular, but things like design, how to coordinate end points, how to trial new agents, etc. I recall either in those talks or somewhere else a startling statistic.
ONLY 3 - 4% of all cancer patients enter clinical trials.
I was stunned - really thought it would be more like 10%, including the vaccines and everything else.

No wonder some trials take forever to accrue enough patients, and SOME have to be abandoned for lack of accrual! There was major appeal to the doctors in attendance to do a better job of participating and enrolling patients in trials.

So, you get a gold star for participating and doing the hard work. And I KNOW the work is hard, but the end result can be many years of NED. Happy New Year dear friend.

12-22-2012, 11:03 AM	#4
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: My Update on 09-093 Trial Dear Karen - WOW - NED, NED and NED again. Love to see that. I seem to not understand which drugs, if any, you are taking now. Anything? That clot experience sounds very worrying! It is indeed a miracle that it unknotted itself and normalized. At SABCS there were a couple of forums on clinical trials. Not any trial in particular, but things like design, how to coordinate end points, how to trial new agents, etc. I recall either in those talks or somewhere else a startling statistic. ONLY 3 - 4% of all cancer patients enter clinical trials. I was stunned - really thought it would be more like 10%, including the vaccines and everything else. No wonder some trials take forever to accrue enough patients, and SOME have to be abandoned for lack of accrual! There was major appeal to the doctors in attendance to do a better job of participating and enrolling patients in trials. So, you get a gold star for participating and doing the hard work. And I KNOW the work is hard, but the end result can be many years of NED. Happy New Year dear friend. __________________ "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.