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Old 01-18-2007, 01:49 PM   #1
fullofbeans
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Join Date: Jan 2007
Location: UK
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Talking from liver mets to NED; battle from the UK

Hi all,

I thought I would share my story here with you. I am 35 y/o and was diagnosed with BC in June 2006, later, in August, i resqueted a scan myself, my oncologist did not initially want to do one since I had no node involvement.. (despite grade 3 HER2+++). Anyhow I am glad I did as my planned treatment was 6 FEC then home with 1 year herceptin.. What would have happen is that in a year or perhaps less my liver would no longer have been functioning properly and then only would we have realised what was happening..i.e it usually takes over 60% of your liver mets coverage until you get symptoms, more difficult to become a NED then (no evidence of desease, complete remission)..

Lesson number 1 : get scanned for mets

I had a clear vision that if was going to survive this I would have to be aware and take my case in hand..at this point I have to explain that here in the UK the health system NHS and it is pathetic: it took 6 weeks from the time i went to my doctor showing a big lump to the time I was seen by a hospital, i kept on returning to my doctor(4 times) to ask why it was taking so long he said stop making a fuss it is not cancer and this is the NHS..a disgrace it really is, a study by a UK University found that the UK has a 10 years survival rate (1999 study)from BC that is 16% behind France/Switz/Germany! UK rate are closer to former soviet countries... by the way I have been living in britain for 14 years but I am originally from France (love the Brits, hate the NHS, well so do most of them too..) the scan i requested was upon a second opinion from France (they also recomended taxotere as adjuvant as it allows to start Herceptin quicker and taxane are good, but taxotere is not allowed on NHS for adjuvant: too costly).

Lesson number 2: For you British resident/tax payers get pissed off, Blair is spending billions on the new nuclear missile Trident, great..Do you realise than 16% less than France means that around 4000 British woman are killed each year, yes each year by the NHS! we should be up in arms, and once i finish my treatment and my own battle i will be lobbying big time. We can find the studies and rates I am quoting on the 1999 study from Coleman http://www.eurocare.it/

When I got my scan back it showed 6 tumours. The Docs/nurses were nice and looked at me in a very sorry way, but in brief I was told that I would have few years even if the treatments worked although they were "anecdoctal case of people doing well on Herceptine for 8 years or more", and that they were nothing else i could do in the world, and that ablation was not an option (I asked). You see just like they had assumed it was not cancer at first, then they assumed it had not spread, now they assumed that they were nothing i could do since they assumed that it would be found, in time, elsewhere that in my liver: hence why bother? (only around 10% of mets are confined to liver, I say it is worth a shot!)... after a research odissey (I was a researcher, a marine biologist so it helps) I went abroad to Germany to receive chemoembolisation (put chemo directly into you liver) and this could be done in parallel with my systemic treatment (switch to taxotere, FEC was not having any effect and tumours was still growing). I asked my oncologist to increase my Taxotere dose to the one used in France, also went on dose dense for 2 months (I wanted to be as agressive as possible in my first line treatment). At least I am grateful that my oncologist here kept allowing me to do what I wanted to have done, despite disagreeing with my choice. Finally I got a laser treatment that removed the remaining 3 tumours. My CA15-3 tumour maker has gone down from 146 in August to 16 in December; which is considered normal. i.e. I am in complete remission Yipehee

Anyhow I am stopping here now.. I am now searching for a trial for HER2 vaccine which I think sound so promising. I hope that despite living abroad I can be eligible to be part in one of the many that are being carried out in the US.

Lesson number 3: stay positive!!! at time I am hitted by the stats that say that I will not live long, but I remind myself that I am not a stat and I stay away from desesperation.

I love you all out there mets people you are so couragous and supportive, thank you for sharing. I want to especially thanks the ladies in the UK that have challenged our governing body to allow us to get Herceptin (they had to go to court to get it, 1.5year ago). Their courage have allowed us to be able to get it.. you have saved and extended livespan thank you..everyday is a blessing.

Kxx
__________________

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; 01-22-2007 at 05:17 PM.. Reason: more to say
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Old 09-03-2008, 08:52 PM   #2
Rich66
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That was good to read.
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