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Old 03-04-2015, 02:11 PM   #1
Barbara H.
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Join Date: Sep 2005
Location: Newton, MA
Posts: 951
Re: Ugh Brain Mets!

Hi DizzyDo,
I had surgery and stereotactic radiation for a 3 cm tumor to my pre-frontal cortex in 2004. I also hated the Dex. I am on Tykerb and Herceptin and continue to be NED. My thoughts are with you.
Barbara H.
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Old 04-16-2015, 02:16 PM   #2
DizzyDo
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Join Date: Feb 2014
Location: Washington State
Posts: 49
Re: Ugh Brain Mets!

Thanks everyone for the kind comments and support! I just got the results of my MRI two months post treatment. No new lesions, the large one is down to 8 mm from 15. The small ones are about the same or a bit smaller. No indication of active disease was the call from the radiation onc. I am so relieved! The onc said it will take a while for the body to reabsorb the tissue from the lesions and possibly might have some scarring. No edema was present (thank goodness, I don't want any more dex!). The rest of me stays NED (well sorta Ned, I have some bone scars).

I still have some fatigue and I gained 20 lbs on the dex. Doc said that should continue to improve, I'm walking about an hour a day and that seems to help.

So the stereotactic rads seemed to have worked. I will be getting MRIs every 3 months for a while now. I'm still on Keppra and probably will be for another 6 months at least. Hopefully I'll get a break for a while, though it's hard to tell on this roller coaster ride!
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 04-16-2015, 02:32 PM   #3
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Ugh Brain Mets!

Hi!
So happy to hear from you and good news to boot!

Looks like all the right things are in place for a long, slow dance with NED.
__________________
"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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