So sorry to hear
...that you have brain mets, Patty.
When you are feeling awful with symptoms is the TIME to not wait. I am just very glad they want to see you right away.
I am not sure what they will think about the Tykerb, as the rad oncs are not very familiar with it yet. But your med onc that has been setting you up for that program should be able to give you the answer. Since it does cross the blood/brain barrier I would think you could take it. It may also be a matter of getting something going against those brain mets NOW and not in 2 weeks.
Just make sure that the docs all confer with each other and keep you in their loop. Ask a LOT of questions, and ask more than once if you are not clear on their replies. The final decision is YOURS remember, but make sure you get as many details as you can and have someone with you to take notes or tape the consultations.
This is VERY frightening, and we don't always think clearly when we have a lot of concerns about family and how we can deal with all the possibilities.
Being part of this group has given you some background on what the rest of us have done in our individual situations, so I hope this background will help you to sort through all the jargon and treatment possibilities.
Sending you all best wishes for strength and moral support in the coming days.
__________________
"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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