helenmorement
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Hi Lainy
I haven’t been on the boards for a while, so have only just seen that things have moved on a notch for you and Teddy. I can see that you still have your sense of humour, although things must be tough for you.
When Alan decided to stop all active treatment, he too said that he felt he had been very lucky in his life and that although he knew he would never be ‘cured’ he felt he had reached a place where he was ‘healed’.
With love and ‘healing’ thoughts for you both …
Helen xx
Thank you, Kris, for posting this!
It would indeed be wonderful if some of our ‘family’ could get there.
We chose the hotel at Stansted Airport because it is easy to get to – it’s a 2 min walk under a covered walkway from the airport/train terminal. And it’s Junction 8 off the M11. (They also offer preferential rates for room and breakfast to AMMF guests.)
If anyone would like more information on any aspect of the Summer Ball, please ask!
With love and positive thoughts for everyone.
Helen xx
Thanks for raising that Marion.
The results of a six year trial here in the UK have now definitely shown that there is benefit from using the two chemos instead of just Gemcitabine, and will now be recommended as standard treatment …
See Dr John Bridgewater’s verbal report:
http://www.youtube.com/watch?v=JtAbdDNUUbk
Kindest regards
Helen
Hi Englishgirl
Heartfelt sympathy on the loss of your mum – and I hope that you find some comfort in meeting people on this wonderful site who really understand what you are going through.
I am in England too, and am involved in a small UK registered charity, AMMF, whose aim is to help research teams working on cc.
Probably seems a strange and odd thing to say – but in my experience the cc ‘family’ are just about the most wonderful people you could ever wish to meet – and most of them are regulars on these boards! So you have come to the right place …
With love and positive thoughts.
Helen x
Many thanks, Lainy, Marion and Gavin for your responses.
Great that Teddy had such a positive response to the CyberKnife treatment, Lainy – and I really hope that you get something equally good to fight the new tumours.
Marion – the two centres I had found offering this treatment in the UK are The London Cancer Centre and The Harley Street Clinic, both private hospitals, so many thanks for your links, Gavin, from which I see also that the Mount Vernon Cancer Centre (NHS hospital) is offering this treatment. No doubt though, if it
Kris
You are an inspiration! Good luck with the new treatment regime.
Sending love and positive thoughts.
Helen x
Hi Jemima
Everything everyone has said here is spot on (and this is certainly a wonderful site for information on everything to do with cholangiocarcinoma).
I would underline what has already been said though – you really should be getting more information than you have, but most “general” doctors in the UK will have seen very few cases of cc.
For something like this, you really need to be seen by someone with as much knowledge as possible. You are certainly entitled to a second opinion – ask for it, and ask by name for the person you want your mother to be referred to.
Professor Peter Lodge has been mentioned (Leeds), and someone else with an first class reputation in both the UK and Europe is Professor David Cunningham at the Royal Marsden (he works at both the Chelsea and Sutton sites of RMH).
With love and positive thoughts.
Helen
Thanks for that information, Rick – really interesting.
As far as I am aware, transplantation is not considered an option here in the UK. Generally, surgery is considered the best option but, as we all know, diagnosis is so difficult and often so late, that surgery is ruled out.
I would be really interested to know if many transplants have taken place in the USA, and what the outcomes have been.
Love and positive thoughts.
Helen
I’m not sure how long it will take for the ‘translations’ to be done, but as soon as they are I will let you all know.
Helen x
Oh my gosh – that certainly seems to tick a few boxes, Kate! Where do you live, UK or USA?
I would be glad to let you have a copy of the research reports when they have been ‘translated’ into plain English.
Helen
Hi Munchkin
Whilst I think it is true the USA have a lot to offer in the field of cc treatments, The Royal Marsden has a very sound reputation, and Professor David Cunningham is the guy to try to get to see there.
After my husband died from cc in December 2000, we set up a charity here in the UK with the aim of raising funds for research into this disease, which is such a cinderella subject as far as research is concerned here. That said, some good work is now happening at Imperial College and at the Royal Marsden’s research centre, too.
Just a thought, you might be interested in having a look at the Penny Brohn Centre’s information (used to be the Bristol Cancer Help Centre) as they have a wealth of information on nutrition, supplements, etc, all of which can be very beneficial. There is a link to this on the Helpful Links page of AMMF, http://www.ammf.org.uk.
With love and positive thoughts.
Helen
