Bonjour LPL, so good to hear from you!
Yes, learning all the signature jargon is a challenge! I have added a signature for now, which I will no doubt revise with time - I kept running out of character allotment though so had to keep editing!
To clarify regarding our knowledge of other options: My H and I are very avid researchers - it is just how we deal with stuff, instinctively - and I have a decent, albeit nonprofessional, science background so I am the one that pours through the scientific literature worldwide. I am also VERY fortunate to have as my two dearest loved ones in the US, a godmother AND a best friend that both survived different forms of cancer and are hugely strong in scientific knowledge and based in NY, so we think of them as our adhoc 'U.S. team' ready to help in any way they can if we run out of options here. They can't cure H, but they can help with NY inquiries and making contact with docs there if we want.
So far, my sense is that part of the limitations on treatments here has to do with UK laws governing who can get what treatment, EVEN when paying privately (ie private medical insurance). So, for instance, our oncologist said that UK law would not ALLOW for H to have a liver transplant because advanced colorectal cancer with liver mets is not in the list of accepted eligibility requirements for liver transplants - EVEN witha willing live donor offering!
I am guessing that the US might not have those limits, but maybe I am wrong.
Similarly, oncologist said that in Britain they just 'don't do' HAI and that answer was echoed when I asked the main cancer charity here. They say the treatment doesn't have enough evidence to support it being used, according to the UK medical establishment - or so I was told.
My feeling is that if M is ultimately deemed 'incurable' according to allowable UK treatments, we have nothing to lose by trying something else available elsewhere!
But for now, we are continuing with the chemo just in case maybe, maybe they can shrink his mets enough to attempt surgery. the docs DO want to save him - absolutely they do - so IF his body responds exceptionally well to the chemo and the liver mets shrink enough, they would reconsider surgery. Plus we are setting up a meeting with the liver specialist who works with the onc, to see if he can explain more and answer our queries directly.
Thanks again and best wishes to you and your husband,
Wife of H age 52 with RC, extensive liver mets, one spinal-all diagnosed 5/17. Liver mets too pervasive for resection (ever, say docs), so trieatment 'palliative'
Folfiri + Cetuxamab 6/17-11/17, shrinkage (not enough for resection); then 'chemobreak'
Tumors regrew quickly in break
Folfox + Avastin currently
** CHEMO SIDE EFFECT SEIZURES **- horrid!
Interests:theatre, art, architecture, travel but limited now by treatment and H's fatigue; no children but one big dog - our live-in comedian!!!