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StephN · 12-13-2007, 02:56 PM

Well, everyone -
My PET/CT of this Tuesday has revealed yet another of the ways that our bodies do amazing things. By the way - nothing was found to indicate any canser activity. Whew!

My last PET/CT in April showed only a very small occlusion in my sub-clavian vein where the catheter threads through. In May the venogram showed a little more clotting. Then I went on the anticoagulation therapy for 6 months.

The new scan shows that that area of my sub-clavian is COMPLETELY clotted up now (in spite of the anticoagulation therapy!!!). BUT - this is the amazing part - my body has created a new network of blood channels AROUND the clotted area and in my general chest region. This explains so much. Like the "venous pattern" that seems more like varicose veins. Well, that is what it IS!

It seems that once these new channels got connected up and moving the blood well enough my swelling has gone down and I am looking much more normal these days.

This also explains why I had the shortness of breath and other symptoms in my chest. So I now feel like I can once again go back to exercising in small increments.

At this point the team thinks I should just keep the port I have since it is working well, and my body has found a way to take care of the blockage created by the clotting along the catheter line.

So that's it - once again I prove to be a "learning experience" for my canser care team. Hope my body will now stop volunteering me as a guinea pig!

12-13-2007, 02:56 PM	#24
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	New scan - new answer Well, everyone - My PET/CT of this Tuesday has revealed yet another of the ways that our bodies do amazing things. By the way - nothing was found to indicate any canser activity. Whew! My last PET/CT in April showed only a very small occlusion in my sub-clavian vein where the catheter threads through. In May the venogram showed a little more clotting. Then I went on the anticoagulation therapy for 6 months. The new scan shows that that area of my sub-clavian is COMPLETELY clotted up now (in spite of the anticoagulation therapy!!!). BUT - this is the amazing part - my body has created a new network of blood channels AROUND the clotted area and in my general chest region. This explains so much. Like the "venous pattern" that seems more like varicose veins. Well, that is what it IS! It seems that once these new channels got connected up and moving the blood well enough my swelling has gone down and I am looking much more normal these days. This also explains why I had the shortness of breath and other symptoms in my chest. So I now feel like I can once again go back to exercising in small increments. At this point the team thinks I should just keep the port I have since it is working well, and my body has found a way to take care of the blockage created by the clotting along the catheter line. So that's it - once again I prove to be a "learning experience" for my canser care team. Hope my body will now stop volunteering me as a guinea pig! __________________ "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.