Good news update - still NED after FIVE years
A friend of mine called this week to say that her PET scan was finally clear after over five years of fighting mets. She had Abraxane and Avastin last year and then some bone spots radiated this summer. She is another amazing warrier woman who spent years in smaller skirmishes with nodes and bone, but finally had to call out the big guns, which worked! I am SO overjoyed for her!!!
While she has been chipping away at her mets, I have been NED now for over five years. I HAD to take the big guns as my mets were overtaking my liver fast and furiously. It seems that a number of us here have had good success in clearing our livers of mets - large and small. That is a good trend to see, as I had no idea what my chances were in 2001.
My brain MRI last week showed stable, but the terminology has now changed. No longer being called radiation necrosis, but scarring. The difference is that with the necrosis, it can spread and damage healthy brain tissue, whereas the scarring is just like any scar. It shows where there was a wound and does not change.
This is on the basis of the spots not changing in size for about a year. This change of terminology is more of a "best guess" on the part of my rad onc, since the scans cannot distinguish between tumor, necrosis or scars. It is also based on the info that I am NED in body and markers are rock solid. But I will go with it!
So, I continue on 3-weekly Herceptin. I also must credit R.B. for his extensive input on balancing omegas 3,6 and 9. I have made a very conscious effort to work on that and feel my diet is helping me to maintain NED. I also use very high quality olive oil liberally. The research on that against HER2 was all I needed to hear.
My best wishes to all of the rest of you in active battle against your tumors that your PET scan will also be dark as midnight one of these days soon.
P.S. For those of you who have been kind enough to ask after my dad, I thank you. He is stable, but very weak and still on the ventilator. Thus he is in a specialized skilled nursing facility about 15 miles from me. My mom is still around as she won't leave him. His progress with the therapists is happening, but extremely slow.
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"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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