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Old 11-09-2009, 01:43 PM   #1
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Still clot probs - port removal tomorrow

Well, I have come to what amounts to a BIG decision for me. After having a port-a-cathater as part of my body for 9 years, I am going to be without for as long as I can.

I am having symptoms of vena cava narrowing where the catheter passes through. Not wanting to let it get as bad as last time, I am not waiting until January as we had tentatively planned.

Been off Herceptin since last December and only have to use my good left arm every 6 weeks or so for labs or scan contrasts.

My vascular surgeon will do an angioplasty to open the vein once the catheter is removed. This is a day patient procedure. Having had both a port replacement and the angioplasty before, I know what to expect, so no butterflies!

And No Herceptin and no port - seems like a new me is emerging!

Let's exchange good thoughts for each other ...
__________________
"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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