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

StephN · 05-04-2007, 07:18 PM

I came home from a 24-hour hospital stay this afternoon armed with an anti-coagulant for clotting along the catheter to my port. This is especially worrisome as I am a Herceptin "lifer" and need a port indefinitely.

Been limping along with various odd, uncomfortable symptoms for THREE months now. Had all sorts of neg/inconclusive scans, doppler, etc leading up to this. A CT pulmonary venogram on Tuesday finally revealed some specific clotting. The clotting is adjacent to my "new in Aug" central venous line (left innominate vein). Seems that removing the line would not be the preferred method of treatment since the port is working well.

Symptoms included: puffy face and eyes, puffiness that has advanced to swelling in my neck, hoarse voice, tightness while swallowing, pressure in my upper chest, feeling light-headed and tired - these are the main ones!

The idea to put me on the Lovenox anticoagulant was arrived at cautiously as I have had 2 brain mets and the risk of a bleed in my brain needed to be ruled out as slim to none. Therefore the request for me to check in to the hospital for observation and undergo more blood work and a head CT. They also wanted to check out my heart, which seems fine.

Side effects from the Lovenox - anyone have any??

I am on 2 shots a day, premeasured .6ml dose. I was told that a 3-month course of this drug was best in cancer patients who may have some changes in their blood from treatment. It is expensive at $44/ shot and I have a $294 copay for 14 shots.
They do take it down to one shot per day and then scan at 2 months. My docs said that this drug is more effective in cancer patients than pill form such as coumadin.

05-04-2007, 07:18 PM	#1
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Clotting in veins - dang side effect! I came home from a 24-hour hospital stay this afternoon armed with an anti-coagulant for clotting along the catheter to my port. This is especially worrisome as I am a Herceptin "lifer" and need a port indefinitely. Been limping along with various odd, uncomfortable symptoms for THREE months now. Had all sorts of neg/inconclusive scans, doppler, etc leading up to this. A CT pulmonary venogram on Tuesday finally revealed some specific clotting. The clotting is adjacent to my "new in Aug" central venous line (left innominate vein). Seems that removing the line would not be the preferred method of treatment since the port is working well. Symptoms included: puffy face and eyes, puffiness that has advanced to swelling in my neck, hoarse voice, tightness while swallowing, pressure in my upper chest, feeling light-headed and tired - these are the main ones! The idea to put me on the Lovenox anticoagulant was arrived at cautiously as I have had 2 brain mets and the risk of a bleed in my brain needed to be ruled out as slim to none. Therefore the request for me to check in to the hospital for observation and undergo more blood work and a head CT. They also wanted to check out my heart, which seems fine. Side effects from the Lovenox - anyone have any?? I am on 2 shots a day, premeasured .6ml dose. I was told that a 3-month course of this drug was best in cancer patients who may have some changes in their blood from treatment. It is expensive at $44/ shot and I have a $294 copay for 14 shots. They do take it down to one shot per day and then scan at 2 months. My docs said that this drug is more effective in cancer patients than pill form such as coumadin. __________________ "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.