HER2 Support Group Forums - View Single Post

StephN · 10-03-2009, 01:29 PM

Hey Sarah -
How is it going? Did you come to a decision? I don't know if you found the answer to your questions regarding scanning for best view of any cancer. My understanding is that a PET/CT is the best since the CT will identify tumors or tumor-like places and the PET will identify at the same time whether those spots have any uptake of the radioactive tracer that is given.

So, you may have a spot, but it could be another type of nodule, but the PET will show if there is abnormal cellular activity or not.

Gentry -
This thread is regarding STAGE IV people who did not get Herceptin as part of first line treatment since we were diagnosed before that was any FDA approval for use of Herceptin other than treating metastatic patients. We got Herceptin as a treatment for advancing disease and that is why we have been on it long term.
I am sure you will be fine with the year given to patients now.

10-03-2009, 01:29 PM	#11
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: advice to stay on herceptin or not? Hey Sarah - How is it going? Did you come to a decision? I don't know if you found the answer to your questions regarding scanning for best view of any cancer. My understanding is that a PET/CT is the best since the CT will identify tumors or tumor-like places and the PET will identify at the same time whether those spots have any uptake of the radioactive tracer that is given. So, you may have a spot, but it could be another type of nodule, but the PET will show if there is abnormal cellular activity or not. Gentry - This thread is regarding STAGE IV people who did not get Herceptin as part of first line treatment since we were diagnosed before that was any FDA approval for use of Herceptin other than treating metastatic patients. We got Herceptin as a treatment for advancing disease and that is why we have been on it long term. I am sure you will be fine with the year given to patients now. __________________ "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.