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Old 08-20-2011, 07:22 PM   #1
Julie2
Senior Member
 
Join Date: Sep 2005
Posts: 556
Re: My News

Hi Beans,

Very thrilled to hear about your good scan results. I have the same issue of having multiple small mediastinal and lung nodules. I am tired of using the chemo. My oncologist doesn't suggest the focal radiation/cyberknife for those nodules. How were you able to convince your oncologist?

Thanks,
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 08-20-2011, 08:55 PM   #2
fullofbeans
Senior Member
 
Join Date: Jan 2007
Location: UK
Posts: 617
Re: My News

Julie if you read my signature you will see that I did it for my liver in 2006. I went and did the treatment despite my oncologist advice against it (strongly against it). A top liver surgeon at the Marie Curie hospital where I had a second opinion really tried to scare me off it (despite the fact that she had never heard of LITT before) she phoned me the night before I was due to go to Germany telling me not to go, how toxic it would be ect.. (It was so hard for me I remember crying so much but then what was on offer against my 6 tumours in various places in my liver : nothing but chemo!), so I went.. I know I would have been dead a long time ago if I had listen to my oncologist/second opinion.. I also know other people that have been helped and gained at least years of life.. i was particularly a success, but I have seen other.

This time round my oncologist (a kind man) wished me good luck.. But I know that the hospital still does not recomend people to do that an some oncologist still against..

Also it is a good practice i understand to treat with direct intervention when it is in the regressing phase (hence the chemoembolisation first)
__________________

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

Last edited by fullofbeans; 08-20-2011 at 08:59 PM..
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