HER2 Support Group Forums - View Single Post

StephN · 12-09-2009, 10:42 PM

Hi from San Antonio -
I have come off Herceptin a year ago after taking it for more than 7 years. My recent scan and labs show nothing of concern.

Tonight I had the pleasure of meeting a famous European doctor here who did a lot of the early work on Herceptin and is working on HER2 therapies still. I introduced myself and told him my status and that I had stopped the drug. He felt that in a case like mine where there has been no tumor activity in several years I am right to stop.

He said that if a patient has shown that kind of sensitivity, it will work just as well if I should need it again.
Anyway this is his experience with his long term
patients.

My case is hormone negative.

Good luck mulling over this decision. I have felt good so far and have not felt anxious about taking this step.

12-09-2009, 10:42 PM	#7
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Discontinuing long term Herceptin Hi from San Antonio - I have come off Herceptin a year ago after taking it for more than 7 years. My recent scan and labs show nothing of concern. Tonight I had the pleasure of meeting a famous European doctor here who did a lot of the early work on Herceptin and is working on HER2 therapies still. I introduced myself and told him my status and that I had stopped the drug. He felt that in a case like mine where there has been no tumor activity in several years I am right to stop. He said that if a patient has shown that kind of sensitivity, it will work just as well if I should need it again. Anyway this is his experience with his long term patients. My case is hormone negative. Good luck mulling over this decision. I have felt good so far and have not felt anxious about taking this step. __________________ "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.