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StephN · 10-06-2008, 09:30 PM

Hi Joan -
My two tumors were very different in size. At the time there was no cyberknife available here, so Gamma Knife was the best way to go for radiosurgery.

One tumor was 3cm and located in my cerebellum. the second one was only about 5mm and in my superior vermis. I could have had an open surgery on the larger and GK on the smaller, but chose to have them both GKed.

All looked good for a year and then the tumor bed of the larger one started to light up and it seemed that maybe it was regrowing. I had an open surgery to excise the area. That was not bad, but I did have to spend a few days in the hospital. With Gamma I just went home and was out driving the next day.

The surgery showed 100% necrosis, but I had a side effect from the surgery as the substance they used to seal my dura did not hold. A cerebral spinal fluid (CFS) leak developed at the back of my head, which I had to have repaired by another surgeon who used a different material to seal my dura and cure the leak.

I would opt for a radiosurgery of some kind, if I had to treat a new tumor.

The decadron WAS rather brutal, but only needed it for 3 weeks and then weaned in 10 days.

10-06-2008, 09:30 PM	#4
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Hi Joan - My two tumors were very different in size. At the time there was no cyberknife available here, so Gamma Knife was the best way to go for radiosurgery. One tumor was 3cm and located in my cerebellum. the second one was only about 5mm and in my superior vermis. I could have had an open surgery on the larger and GK on the smaller, but chose to have them both GKed. All looked good for a year and then the tumor bed of the larger one started to light up and it seemed that maybe it was regrowing. I had an open surgery to excise the area. That was not bad, but I did have to spend a few days in the hospital. With Gamma I just went home and was out driving the next day. The surgery showed 100% necrosis, but I had a side effect from the surgery as the substance they used to seal my dura did not hold. A cerebral spinal fluid (CFS) leak developed at the back of my head, which I had to have repaired by another surgeon who used a different material to seal my dura and cure the leak. I would opt for a radiosurgery of some kind, if I had to treat a new tumor. The decadron WAS rather brutal, but only needed it for 3 weeks and then weaned in 10 days. __________________ "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.