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Old 10-08-2007, 12:01 AM   #7
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
My experience

Dear Vanessa -
I had just written a response and a Google update just wiped it out!

My feeling is that this news does not bode well for a clean scan. My med onc was calling me before I even got home when my MRI showed mets.

He had not actually seen the scan but had a call from the radiologist who read my MRI that something showed and I should immediately start the decadron. This was because I had some diffuse inflammation and they want to start curbing this right away. Any treatment will cause more inflammation, except Tykerb.

The practice is that the radiologist calls the med oncs if there is something new or tumors are enlarging so they can act quickly and get the patient back in.

My best thoughts go with you to this important appt. You may not see this reply until you get home, as it is late on the west coast.
__________________
"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.
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