Strange symptoms - need answers!
Hello Everyone -
Once again I am "a puzzle" to my care team. More of a Medical Nightmare looking at it from my side. Let me know if any of you have ever heard of or seen anything like what I describe below. Thanks.
Last spring I posted about having been diagnosed with a clot along my catheter and needing to have anticoagulation therapy for that. Several answered about that and it seemed a good thing to do with reasonable success.
Now after the prescribed 6 months of taking these expensive Lovenox shots, I still have the symptoms I started with, just less severe. Now they are not even sure I need to stay on the shots as they may not be doing a thing for me.
Saw my port placement surgeon yesterday (the famous Dr. Hickman) and he was shocked at how puffy my face and neck still are and at the sight of the venous pattern on my lower chest and across my ribs. It really looks like a mild case of varicose veins spreading just below my breasts. Said he NEVER saw anything like that before and had me come across the hall for all his nurses to gather and take a look at me. They too were completely shocked to see how I looked.
Dr. H. will consult with some of his colleagues and try to come up with an explanation or another specialist to send me on to. Since the puffiness and venous pattern are on BOTH sides and fairly even, he is doubting the catheter is the problem. He is even suspecting an allergic reaction of some kind, but to last this many months, is also strange.
I could see the wheels going inside his brain as he stared at me (really more like staring past me at my problem). So, I have hope that somehow I can get to the bottom of it.
__________________
"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.
|
Threaded Mode