HER2 Support Group Forums - View Single Post - Has anyone ever been told that they would not go NED by their Onc but did anyway?

StephN · 01-03-2007, 02:54 PM

Sherry and Nicola -

The answer to why I did not have the surgery or ablation is not so simple.
As with Nicola, my liver mets were all over my liver. As they receded in response to the chemos, there were a few stubborn spots. Each scan showed improvement.

Finally there were 3 spots left. The largest and most stubborn was wrapped around one of the main hepatic veins and well nourished. This was not a good site for surgery, so we had to pursue with more rounds of chemo, which worked in the end.

I agree that I was lucky in the chemos being so effective. As the mets receded there was less tumor area for the chemos to target and those last few blasts got the stubborn tumors. (Actually, I was trying to get mentally prepared to have a long fight with more drugs for these last spots, as I did not know anyone who had such good results at that time. But, my treatment team was optimistic that I could get to a complete response.)

01-03-2007, 02:54 PM	#11
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Liver resection question Sherry and Nicola - The answer to why I did not have the surgery or ablation is not so simple. As with Nicola, my liver mets were all over my liver. As they receded in response to the chemos, there were a few stubborn spots. Each scan showed improvement. Finally there were 3 spots left. The largest and most stubborn was wrapped around one of the main hepatic veins and well nourished. This was not a good site for surgery, so we had to pursue with more rounds of chemo, which worked in the end. I agree that I was lucky in the chemos being so effective. As the mets receded there was less tumor area for the chemos to target and those last few blasts got the stubborn tumors. (Actually, I was trying to get mentally prepared to have a long fight with more drugs for these last spots, as I did not know anyone who had such good results at that time. But, my treatment team was optimistic that I could get to a complete response.) __________________ "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.