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StephN · 03-17-2009, 11:06 AM

Dear Flori-who-is-NOT-going-to-let-a-little-cancer-get-her-down,

News in our world does not get much better that what you just posted.

About your necrosis question. Dying tissue can also have PET activity as showed with my gamma-knifed cerebellar tumor. The second followup MRI showed activity in the old tumor bed that freaked out my brain team. They were sure the tumor was active again. I had a brain PET, which showed enough uptake that they thought tumor was confirmed.
Well, when they opened up my head back there, all they took out was 100% necrotic tissue. This has also happened to Barbara H. and others here with brain mets.

Seems someone else here had necrotic bone tissue in hip, but seems to have been a while ago. Don't know if you can search and find that post.

The scans are just not perfected to the point of distinguishing what is causing the PET uptake in some cases. If you have no other signs of cancer - necrosis could be your nemesis.

03-17-2009, 11:06 AM	#20
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear Flori-who-is-NOT-going-to-let-a-little-cancer-get-her-down, News in our world does not get much better that what you just posted. About your necrosis question. Dying tissue can also have PET activity as showed with my gamma-knifed cerebellar tumor. The second followup MRI showed activity in the old tumor bed that freaked out my brain team. They were sure the tumor was active again. I had a brain PET, which showed enough uptake that they thought tumor was confirmed. Well, when they opened up my head back there, all they took out was 100% necrotic tissue. This has also happened to Barbara H. and others here with brain mets. Seems someone else here had necrotic bone tissue in hip, but seems to have been a while ago. Don't know if you can search and find that post. The scans are just not perfected to the point of distinguishing what is causing the PET uptake in some cases. If you have no other signs of cancer - necrosis could be your nemesis. __________________ "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.