helenmorement
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Hi Carol
I have emailed you, but as I have already been able to get some information from one of my contacts, Professor Simon Taylor Robinson at Imperial College in London, I thought to post it here might be be quickest way to reach you.
Simon says he had a patient in similar situation to yours who went to the USA (Gregory Gores) who offered very radical surgery and removal of the lymph nodes and then radical chemotherapy. The patient survived and is still alive 3 years later when Leeds told him it was inoperable. This was at the Mayo Clinic in Rochester in USA.
(According to both Simon and Shahid Khan, another of my contacts, the world experts on radical therapy for cholangiocarcinoma are Prof Gores’ group at the Mayo clinic.)
He does also say that David Cunningham is a very good oncologist.
With love and positive thoughts.
Helen
Thanks Kris and Gavin!
We’re really interested to know what more they are finding out about genetic implications and how that might impact on families where cc has appeared.
Does anyone know of families where cc has appeared in more than one member?
The previous research at Imperial has shown that there are also environmental toxin implications (but really no surprise there, I guess, and could be one of the reasons why the incidence of cc is increasing). And one of the main branches of the research they are undertaking presently is to find ways of diagnosing much earlier.
I know there is a system for sharing research results in Europe so that work doesn’t get needlessly repeated but I would like to know if there is any reciprocal arrangement with the USA – so that’s something else I will try to find out.
I am really looking forward to this update, and will certainly let you know about the progress they are making.
With love and positive thoughts for everyone.
Helen x
Prof L
I run a small UK charity, AMMF, which was set up after my husband, Alan, died from cholangiocarcinoma at the end of 2000. (Please look at the web site to see what we do – http://www.ammf.org.uk)
The aim of AMMF is to raise money to support research teams working in the areas of gastrointestinal cancers, and especially cholangiocarcinoma. We are presently giving grants (albeit small) to Professor Simon Taylor-Robinson and his group at Imperial College who are researching the causes of cc, to Professor David Adams at Birmingham University researching dendritic cell therapy in primary liver cancer, and to Professor John Primrose
Hi Teresa
So sorry to hear about your son Alan – no one expects to see their child leave this world before them, and to such a cruel disease. Cholangiocarcinoma seems to be no respecter of person, no matter what their age is, how much they are loved, or how important they are to their family. My heart goes out to you.
I look forward to your contact through the AMMF site (http://www.ammf.org.uk). We are doing what we can to raise the awareness of cholangiocarcinoma here in the UK (the incidence of which is increasing), but it is difficult …
Helen
Thank you Stacie, for bringing up this topic.
Being in the UK, we don’t have to endure the pain of Thanksgiving without our special person. Christmas is huge here, and a really important family time.
Everything bad with Alan’s cc seemed to happen at Christmas time – diagnosis on 15th December, return of the disease with a vengeance at his last Christmas, and then he passed the following 21st December. So, a time that was once such a happy time and full of our little family traditions that we had built up over the years turned into the saddest of times.
On Alan’s first anniversary we had a memorial service for him at our beautiful village church, which enabled everyone who loved him to get together and share readings and specially written pieces with each other, which none of us had been able to do at the funeral service when the grief was just too raw. It was truly a celebration of Alan’s life, and I found that a great help and I know my son did, too.
Since then we have marked Alan’s anniversary in our home each year with an Open House on the Sunday closest to the date, to which all friends and family are free to come – not to be sad, but to share good memories, have something to eat and raise a glass or two. In this way, I tend to focus on that day, which has become a special day for my son and myself, rather than on Christmas Day, which still remains a difficult one that just has to be got through the best way I can.
With love to everyone with cc, caring for someone with cc, or who has lost someone to cc, and who is going through a hard time during the holiday season.
Helen
Hi Alison
How lovely that you managed to have that holiday to look back on! And you are right that Christmas will be especially hard for your children. My son is now 25 (just) and was 18 when Alan died. He had seen his father suffer so much (15 when Alan was diagnosed), which is just another aspect of this cruel disease. I sometimes wonder if I was any help to him at all with his grief, as I was just so overwhelmed with my own …
Sorry … beginning to ramble a bit.
Back to the present – We are just putting together the next AMMF newsletter, which will be printed in the next few weeks. As you are in the UK, if you would like to receive a copy, please contact me through the website, http://www.ammf.org.uk.
Best regards
Helen
Hi Jules
I have just found this site today – how could I have missed it for so long ??
After Alan, my husband, died from cholangiocarcinoma in Dec 2000 we set up a small registered charity, AMMF, to raise funds for research into this disease. Is it possible you could let me have info on this meeting at the House of Commons on 5th December – is it private or open? I would love to get the chance to attend on behalf of AMMF (http://www.ammf.org.uk) …
Kind regards
Helen
Hi Kris
Thanks for that.
I see that you have had cc – I send you my very best wishes that you continue to be well.
Best regards
Helen
Hi Alison
Good to hear from you – but so sorry to hear about Jon. Alan died on 21st December 2000, so I guess we are both always going to have a hard time at Christmas.
We were lucky enough to get three years after the diagnosis, with the chance to take a couple of holidays and store up some precious memories – not that the memories from the ‘normal’ good times aren’t important but, somehow, when you know the time is limited everything takes on a different perspective.
Setting up the charity and working to raise money has helped me to keep positive, and although it sometimes feels like throwing a glass of water at a volcano, I will keep on doing it!
Best regards
Helen
