HER2 Support Group Forums - View Single Post - Clotting in veins

StephN · 05-05-2007, 06:09 PM

Thanks for all the thoughts and for Barbara's report from a fascinating conference. I do supplement Folic Acid and probably NOT enough vit. D!

What I have is a DRAINAGE problem - the clotting is in a vein that leads down from my head and neck. There is something called Superior Vena Cava syndrom and my problem mimicks that - just in another vein.

Sheila - thanks for the word on your Mom with this drug. What did she need it for?? I caught up on my dental work last Fall/Winter. They said I could keep my scheduled colonoscopy while on this anticoag.

Michele - my ANA was positive, but not highly so, and I was given some test for Lupus a couple of years ago (was neg) when I had that connective tissue swelling in my hands and wrists. Will look up as you suggested.

Ann - I have had this swelling and puffiness creep up rather gradually, and I was not on any new medication during that time. In fact it was during my "Herceptin holiday" and no one thinks that has anything to do with the problem. Just began the Lovenox yesterday so am still waiting for this to take effect.

Kim - the clotting is along the catheter line of my new port. It is in a different vein than the old one which developed the fibrin sheath on it. If your port is not drawing you should have a DYE STUDY done to see what is happening. They do this under a flouroscope and you can watch on the moniter. I bet you are due for a replacement. Just one of those "perks" of being a long-term stage IV patient.

05-05-2007, 06:09 PM	#9
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Thanks for all the thoughts and for Barbara's report from a fascinating conference. I do supplement Folic Acid and probably NOT enough vit. D! What I have is a DRAINAGE problem - the clotting is in a vein that leads down from my head and neck. There is something called Superior Vena Cava syndrom and my problem mimicks that - just in another vein. Sheila - thanks for the word on your Mom with this drug. What did she need it for?? I caught up on my dental work last Fall/Winter. They said I could keep my scheduled colonoscopy while on this anticoag. Michele - my ANA was positive, but not highly so, and I was given some test for Lupus a couple of years ago (was neg) when I had that connective tissue swelling in my hands and wrists. Will look up as you suggested. Ann - I have had this swelling and puffiness creep up rather gradually, and I was not on any new medication during that time. In fact it was during my "Herceptin holiday" and no one thinks that has anything to do with the problem. Just began the Lovenox yesterday so am still waiting for this to take effect. Kim - the clotting is along the catheter line of my new port. It is in a different vein than the old one which developed the fibrin sheath on it. If your port is not drawing you should have a DYE STUDY done to see what is happening. They do this under a flouroscope and you can watch on the moniter. I bet you are due for a replacement. Just one of those "perks" of being a long-term stage IV patient. __________________ "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.