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Old 05-29-2010, 09:39 AM   #1
Christine MH-UK
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Join Date: Sep 2005
Posts: 414
Re: Please let me know what you think i should do next

Hello Fullofbeans,

If you are not being treated at Royal Marsden, I would recommend that you get a referral there, since they seem to have a much more expertise and ways of getting things than other places do.

Best wishes,

Christine
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Old 05-30-2010, 07:36 AM   #2
fullofbeans
Senior Member
 
Join Date: Jan 2007
Location: UK
Posts: 617
Re: Please let me know what you think i should do next

Thank you all for your values info.

Basically now I want tykerb (now) whirslt i am looking at long term options.

How much and how do you get it in the UK?? does anyone knows ellie have you ever found out that info?
__________________

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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Old 06-05-2010, 09:25 AM   #3
Christine MH-UK
Senior Member
 
Join Date: Sep 2005
Posts: 414
Re: Please let me know what you think i should do next

You could try to go private, but it might be expensive if you are not a patient. The local BUPA hospital wanted £60,000 from me for a year of herceptin before it was on the NHS, partly because they were billing for my oncologist, even though he was donating his time to his 'highest-risk her2-positive patient.' If you could get it privately through something like healthcare at home, it would be cheaper (since they administer outside of a hospital, they don't need to pay VAT).

Another option might be to look into trials via http://www.clinicaltrials.gov, which should have all of the GSK trials in Britain, since the company has publicly committed itself to putting all of its trials into this database, as well as some others.

There is a Genentech trial, for example, in which participants get either T-DM1 or Capecitabine + Lapatinib
http://www.clinicaltrials.gov/ct2/sh...U%3AGB&rank=17
There are, of course, participation criteria, but it might be worth considering since these two options both seem very good.
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