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Old 03-05-2011, 12:35 PM   #8
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: if had or brain mets please share your knowledge

Dear Pam -
I know how hard it is to focus energy, when you are low anyway, on a new and important area of concern. Especially the brain, as there is a lot to know if you want to be interactive with your treatment and team of docs.

Especially now that there is so much research and advancement in treatment of various kinds of mets.

If you have been following CourtneyL's story here, she has avoided WBR even with numerous small mets.

In your case, you have enough systemic disease that they want to knock out any little "seedling" cells in your brain with the WBR, as well as what they can see. This may or may not "do in" the larger one.

Our brain has 4 ventricles, which move the cerebral spinal fluid through our brain area. My cerebellar met was large enough to cause inflammation that was encroaching on the nearest ventricle. The area of inflammation was very visible on my MRI. The decadron speeds up the shrinkage of that inflammed area. (Guess that is why we feel generally sped up as well.)

I did not yet have any symptoms and only two lesions, so they did not feel seizure was an issue and did not restrict my driving. It is the assessment of seizure risk that mainly determines whether they ask you not to drive.

You will notice that every time you see your rad onc someone asks you to do various things so they can check your reflexes, reactions, etc - called "neuro checks." If you do well with these, it is a good sign.
__________________
"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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