12 years since DX - stage IV - still NED - new problem
The great news is that after 10 years with stage IV status I am still NED. NED in body as well as my noggin.
The latest is that I have been suffering with a nerve impingement at L3 - about waist level. The pain goes down my left hip and all the way down the FRONT of my leg to my ankle. Spent 5 days in the hospital to get the pain under control and get some flexibility back in my hip. As well as start to walk a few steps with a walker.
This has been going on since before Labor Day. After something called a CT Myelogram the real disk problem was finally seen, which did not show well on the MRI, which confused the neuro team. Have had two injections in the area of the impingement and the second one has helped so I am reasonably mobile now, still with one of those 4-wheel walker models.
Have appointment with my neurosurgeon in 2 weeks, but am on the cancellation list to try to get in sooner. So, it looks like a little back surgery may be in my near future.
Moral is if we can get well enough to be very active, there are other tricks waiting down the line for our body to play on us. So, I join Elaine on the Back Problem list.
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"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.
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