HER2 Support Group Forums - View Single Post - Still clot probs

StephN · 11-09-2009, 01:43 PM

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 ...

11-09-2009, 01:43 PM	#1
StephN Senior Member 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.