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Old 02-10-2009, 02:33 PM   #1
logancounty
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Join Date: May 2007
Location: Springfiled, IL
Posts: 5
any info or advice?

I was wondering if anyone has ever been treated for mets to the spinal fluid? I was dx with brain mets 2 years ago in April. Had WBR, Radiosurgery and finally they just took it out. Now my Neor. thinks I have cells in my fluid. My left eye has become unusable and I have other symptons. My question is has anyone had chemo directly to the brain? They want to put a port in my head and that scares me! I would appreciate any info on this treatment. Thanks
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Old 02-10-2009, 03:33 PM   #2
StephN
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Location: Misty woods of WA State
Posts: 4,128
Hi and welcome to this group. Most of us here with brain mets have been treated with either radiosurgery or open surgery.

We have had some here who had the Omaya Reservoir installed to directly get drugs to the cerebral-spinal fluid. There is someone currently on this site who is thinking about that option.

What other treatment are you on? Have you tried Tykerb (assuming you are HER2 positive)? Temador is another drug for brain mets, but I am not sure how effective it is for treating the whole fluid system.

Keep probing and asking the questions.
__________________
"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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