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StephN · 03-28-2013, 07:26 PM

Dear Jill -
There have been MANY of us here on this site who have had to get brain mets treated. Seems about half report this same conundrum. I had it. The rad oncs thought my 3cm tumor was not completely dead after Gamma Knife and went into the back of my head (cerebellum) to take out the area to be sure it was not tumor regrowth. It was NOT - the active place was 100% necrosis. It was not bothering me and I did not need to go back on the dex. That surgery was just a knee jerk reaction, in 20-20 hindsight!

Go slow with the thing. Usually the radiated tumor will quiet down and give you no more trouble with a little waiting.

03-28-2013, 07:26 PM	#8
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Progression or Necrosis in the brain? Dear Jill - There have been MANY of us here on this site who have had to get brain mets treated. Seems about half report this same conundrum. I had it. The rad oncs thought my 3cm tumor was not completely dead after Gamma Knife and went into the back of my head (cerebellum) to take out the area to be sure it was not tumor regrowth. It was NOT - the active place was 100% necrosis. It was not bothering me and I did not need to go back on the dex. That surgery was just a knee jerk reaction, in 20-20 hindsight! Go slow with the thing. Usually the radiated tumor will quiet down and give you no more trouble with a little waiting. __________________ "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.