HER2 Support Group Forums - View Single Post

StephN · 12-29-2009, 11:45 AM

Yes, marilyn, stopping the Herceptin DID feel like a VERY big step. I considered it for a while, and spoke with my med onc about it. I still see her quarterly. She set me up for FULL surveillance prior to the next visit. Pet/CT, every bit of blood work you can think of, DEXA, HER2 serum on a more regular basis.

With all that information putting me in the clear, I made my decision.

In your shoes, I would want all those tests ASAP for ease of mind before going ahead. Do you get brain MRIs?

After about 3 months, I began to feel quite liberated from my cancer center. They did a lot of remodeling and when I went back, I felt like a "Stranger in a Strange Land." Can you picture that?!? It is life changing, to gently snip that umbilical cord.

12-29-2009, 11:45 AM	#6
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Scan Frequency Yes, marilyn, stopping the Herceptin DID feel like a VERY big step. I considered it for a while, and spoke with my med onc about it. I still see her quarterly. She set me up for FULL surveillance prior to the next visit. Pet/CT, every bit of blood work you can think of, DEXA, HER2 serum on a more regular basis. With all that information putting me in the clear, I made my decision. In your shoes, I would want all those tests ASAP for ease of mind before going ahead. Do you get brain MRIs? After about 3 months, I began to feel quite liberated from my cancer center. They did a lot of remodeling and when I went back, I felt like a "Stranger in a Strange Land." Can you picture that?!? It is life changing, to gently snip that umbilical cord. __________________ "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.