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StephN · 06-13-2009, 02:07 PM

Dear Marie -

I am having trouble believing that all the spots on Ed's scan are all tumors. He has had WBR, Gamma and taken Tykerb. This would be an all time record as far as this group for all these treatments to fail like that.

I am thinking about my own case as well as others of us like Barbara H and Jojo who supposedly had new spots in old treated areas and come to find out through open surgery that they were DYING tissue and NOT new lesions. 100% necrosis!

Remember that the MRI can NOT differentiate between actual tumor and necrotic tissue. SO, with that in mind, I am thinking that if there is a place with some kind of new scanning equipment that COULD give a better picture of what the spots ACTUALLY are, that would be my first step.

Especially since you are not reporting that Might Oak has symptoms at this time. With THAT many lesions, I have to think that he would show some outward sign that they are cancer lesions.

Maybe Dana Farber has such a new system. Dr. Winer would know about that.

I am going to live in "HOPE" that many of these "spots" are just "spots" of dying tissue.

I can take this route of thinking, since my two gamma knifed spots seemed to disappear and then one year later show up again. I still have one 5-6mm spot that continues to sit there unchanged through scan after scan and it is read as "scar."

Thinking SCAR, SCAR, SCAR!!!

06-13-2009, 02:07 PM	#1
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	MARIE - What about necrosis??? Dear Marie - I am having trouble believing that all the spots on Ed's scan are all tumors. He has had WBR, Gamma and taken Tykerb. This would be an all time record as far as this group for all these treatments to fail like that. I am thinking about my own case as well as others of us like Barbara H and Jojo who supposedly had new spots in old treated areas and come to find out through open surgery that they were DYING tissue and NOT new lesions. 100% necrosis! Remember that the MRI can NOT differentiate between actual tumor and necrotic tissue. SO, with that in mind, I am thinking that if there is a place with some kind of new scanning equipment that COULD give a better picture of what the spots ACTUALLY are, that would be my first step. Especially since you are not reporting that Might Oak has symptoms at this time. With THAT many lesions, I have to think that he would show some outward sign that they are cancer lesions. Maybe Dana Farber has such a new system. Dr. Winer would know about that. I am going to live in "HOPE" that many of these "spots" are just "spots" of dying tissue. I can take this route of thinking, since my two gamma knifed spots seemed to disappear and then one year later show up again. I still have one 5-6mm spot that continues to sit there unchanged through scan after scan and it is read as "scar." Thinking SCAR, SCAR, SCAR!!! __________________ "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.