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Thank you all so much for being pissed off too, for some reasons it helps (I guess nice to be understood)
I sooo agree with finding things early for a chance to get NED again. By the way I am a real phenomena here because they simply do not have stage 4 NED in this country..did you know that I instigated the CT scan that revealed my liver mets in 2006. They had planned 6 FEC and no scan and send me home until symptoms would have showed up, the FEC was later shown not to work on my tumours.. If I had followed their advice think how much worse off I would have been...
I am afraid that changing oncologist may not help because it is the same everywhere in the UK. I had to raise money for my treatment on liver. They are reactive not proactive, in the long run it does not make any sense even financially.
Thanks again for all the good words of support, prayers and yes I have every intention to become a cranky old woman ;-)
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35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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