HER2 Support Group Forums - View Single Post - from latest article on CNS mets in her2+ metastatic breast cancer pts on herceptin

StephN · 10-13-2008, 11:08 AM

The first question in the opening post asks about ASYMPTOMATIC patients.

I had mets, but was getting a routine brain MRI about once a year.

Had NO symptoms of a 3cm tumor in the lower left back lobe called cerebellum. If it had gone much longer, I am sure there would have been more complications and I would have had to stay on the "dreaded Decadron" for longer.

Just a reminder that previous stats quoted on this site were that it is about 10 percent of brain tumors where they are the FIRST site of distant mets in HER2 positive patients stages 1 to 3.

That stat is a few years old and I don't know if new information has come to Joe & Christine that would change this, but I feel sure that if they had any new information we would know about it.

HER2 driven brain mets seems to grow faster than other kinds, but maybe pattyz can comment on that.

10-13-2008, 11:08 AM	#13
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	The first question in the opening post asks about ASYMPTOMATIC patients. I had mets, but was getting a routine brain MRI about once a year. Had NO symptoms of a 3cm tumor in the lower left back lobe called cerebellum. If it had gone much longer, I am sure there would have been more complications and I would have had to stay on the "dreaded Decadron" for longer. Just a reminder that previous stats quoted on this site were that it is about 10 percent of brain tumors where they are the FIRST site of distant mets in HER2 positive patients stages 1 to 3. That stat is a few years old and I don't know if new information has come to Joe & Christine that would change this, but I feel sure that if they had any new information we would know about it. HER2 driven brain mets seems to grow faster than other kinds, but maybe pattyz can comment on that. __________________ "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.