i take your point that 2 national centres and 2 spcecialists would not be able treat everyone , The centres could be used as a resource for other hospitals for information and advice. If people wanted to and were able to attend one of the centres then great , but if not ,specialist help and advice could be given to the treating Dr . At the very least all cancer units should know how to acess the information
we live in London and Jon was treated by one of the best cancer hospitals in Europe and they had no usefull treatment options and were also not really interested in any of the research that we found on the Net
Jon was operated on by Prof Lodge after us finding out about him and asking for a referral.The Dr Jon was under had not heard of the Prof and his work.
I feel that national centres that are well known would help this process and speed up usefull treatment . It will be too late for Jon as he died in Dec06, but I really hope they help other people
I Know that in the UK treatment options are set by NICE guidelines and specialist centres will also help to develop and set the latest treatment options hopefully based on worldwide research
I agree with you.National centres are vital .Guidelines and treatment options could be set by them and could be acessed by all hospitals . People then have the choice of travelling to the centres or getting treatment locally .
We live in London and travelled to Leeds to have treatment for my husband under Prof Lodge. He was prepared to travel almost any where in the UK for positive treatment as our local hospital could offer no hopefull treatment.
Re: National centers for cholangiocarcinoma surgery (9 replies, posted in Introductions!)
You may remember my husband Jon , you operated in Nov 06 with unfortunately a bad outcome, but we were so pleased to find you after a lot of research by myself.
I think national centres would be a excellent idea , as you may recall we came up to Leeds from London after a referral from our local cancer hospital This was a world renowned cancer hospital , but they were unaware of you and your work in Leeds until we requested a referral ,and there was a very limited scope of treatment they could offer and all of it without any hope
I think that the distance involved was a minor issue for us , we went up to Leeds 3 times and had the outcome been good we would have travelled up for reviews post op as well.However saying that we were lucky to have some financial help from both our families to enable us to travel and stay in hotels .
Two centres 1 in the south of the country and 2 in the north may go a way to resolving some of this.I
I think that for a specialist service ,generally people would be prepared to travel a bit further
Another issue may be quicker acess to tests , Jon had abnormal blood liver tests, then had to wait 6 months for an ultra sound , then 2 weeks for a CT scan which then showed such a huge tumour that the person doing the scan was unable to hide his horror at what he could see on the screen ,not a pleasant experience for Jon.
Thank you for trying to set up these centres and and again thank you for your care of jon , mainly for giving him a glimmer of hope
Will these messages be forwarded to the DOH ? or do they need to be contacted directly?
Re: anyone exerence personality changes long before diagnosis? (28 replies, posted in General Discussion)
My Husband Jon died in Dec 06 , He was diagnosed in March 06 and they told us he had probably had the cancer for about 2 years going on the size of the tumor. When I l think back to that time I can see that there was something going on , he became tired very easily and did not want to socialise as much as usual and looking at pictures now I can see it in his eyes , which I did not notice at the time.
My husband Jon died in Dec 06 from CC , it was our 21st wedding anniversary in April 07 .My daughters 16 and 18 bought me some flowers which was really nice . I had a quiet day nothing special , just remembered in my own way and have a bit of a cry. I would not have wanted my daughters to get a card from Jon for me to find ,that would have been about the only thing they could have done that would not have helped . I was glad the girls had rememebered the day ,
If there is a grave or stone you can visit that would be good take some flowers and have a chat , unfortunately we did not have that option ,I would have liked to do that with my girls
Hope this is of some help
Hi Helen and Kris
we were lucky to have a holiday already booked for last year , 3 days after we got the diagnosis in March we were due to fly to Tobago for a friends wedding , there were about 20 of us going , we ummed and ahhed a bit , but after a discussion with our GP and some internet searchs we decided to go and I am SO glad we did , we all had a great time and that holiday will be talked about for many years .
Jon died on 4/12 so christmas as you say will always be hard , especially for my children16 and 18 now
And to you Kris glad to hear you are doing well
I too live in England .
Alans story is very similar to my husband Jon who was 45 ,he also had a gastric bug and went to our GP who found his liver to be very enlarged , various tests and scans later he was diagnosed with CC , he had chemo with no effect . We too , were lucky to find a surgeon in Leeds ( advice from this site ) we live in the south of England , who could offer us no guarantees and very poor odds , but Jon decided to take the chance he unfortunately died 20 days post Op in Dec 06 ,9 months and 1 day after his diagnosis
I wanted to donate money from the funeral to a relevant organisation , and luckily there was one at the hospital in Leeds into research in liver surgery , but not specifically into research into CC
Well done for founding this charity
Hi Jules and everyone
I too look at people older than Jon , he was 45, and think " how unfair "
As the 1st anniversary of the Op and everything that followed is approaching , I find I am going over it again in my head and am having problems sleeping and concentrating again I think as you say you just learn to live with it
SO sorry to read about your Dad, As I said before you and your Dad were so helpfull to Jon and I when we needed advice and I really admired your strengh and determination
My thoughts are with you and your family
Alison Jon's wife
I do not check this site regularly now , it took me a long time to stop looking daily after Jon died
I was so sorry to read about your Dad , you were both so helpful when we were looking for 2nd opinions and we were so thankfull to hear about Prof Lodge .
My thoughts are with you both and your family
We were told it was the enlarged liver pressing on one of the main nerves causing referred pain to the shoulder, I think it was the phrenic nerve A pet scan showed no evidence of any tumour anywhere but the liver.
Hi Lainey and teresa
My husband Jon also c/o pain in his shoulder had no other symptoms, tumour was found by "accident " after a stomach bug
I am so pleased to see that you are doing well on this treatment. I always look out for your posts.
Alison Jon's wife
I am so sory for your loss .It is great that you will now resaerch into CC this is really needed and really appreciated
i totally agree with all you say .
Jon was referred for a scan in July 05 and had in in Jan 06 ! Our GP did not think it was that serious I think and was horrified when he had to tell us the diagnosis in Mar 06. We were told the chemo would most likely have no effect at all ,that the tumour would not shrink to enable a resection to take place . I asked about the various drugs we had read about on this site, Avastin xeloda etc and we were informed he could not have them due to NICE guidelines .
We were lucky enough to find Prof Lodge on the NHs and as I said before despite the outcome it was the right move for us
I work in ther NHS I am a nurse and i agree with you, feel very let down . Jon was treated at one of the best UK cancer centres ,we never saw the same Dr twice no personal interaction at all
I do have to say that in Leeds everyone in the team from the tea lady to Prof Lodge was wonderful , such a difference attitude to us both
Rant over sorry
I agree with most things that ketzey said , however I do have to disagree with the view that if the cc tumour is in the liver , a resection will not be offered , my husband had a very large tumour approx 9cm by 10 cm ,with a clear diagnosis from biopsy of cc , and we found a surgeon in Leeds UK who operated , it was considered a primary tumour not a met and was near the portal vein .
I would also add to ketzeys words of caution , it was a very intense long operation which due to post op complications , infections etc , he did not survive , the actual removal of the tumour was sucessfull !! I too do not want to be too gloomy and I do not regret the fact that jon had the op and we had long discssions about the danger before , but it pays to be aware of all the implications of this horrible cancer and do lots of research , this site is a valuable resource for this
Prof Lodge is at St James University hospital in Leeds his secretary's number is 01132064890. We had a 2nd opinion from him re surgery . You are right ,10 cm is a very big tumour, Jon's was 9cm by 10 cm, but Prof Lodge felt surgery was an option , and I will never regret the decsion to go ahead with surgery despite the outcome Prof Lodge and his whole team are wonderfull,
It is a very good idea , I like you Patricia find myself looking at the site frequently despite Jon dying in Dec 06
My thoughts are with you Stacie and your family
Re: Please provide comments: 2007 Gastro-Intestinal Cancers Symposium (4 replies, posted in Announcements)
Its very exciting that you are able to attend this very important conference I just hope that all his research and new information will be of beneft to people in the UK and europe .
When My husband Jon was being treated by the Royal Marsden in London one of our top cancer centres , we asked about some drug combination therapies we has seen discussed on this site and were told that the only drug that could be given was gemcitabine and this was ruled by NICE guidelines , they did say they may be able to use 5FU as a last resort.
It would be so good to see all research into this disease being available to all who suffer.
Very sorry to read your bad news, sorry cannot offer an opionion on 2nd line chemo , it was not offered to us , Gemcitabine (gemzar ) was our only option.
Make the most of the time with your Mum
Best wishes for the furure
Alison Jons wife
I was very sorry to read about your husband , my husband was 45 when he was diagnosed and it was an awful shock to be told there was no effective treatment. We too have teenagers .
I would echo everyone else , get as much information from as many sources as you can , this site is invaluble for this, as said before read all the posts and get as many medical opinions as possible to give you an informed choice of treament.
My best wishes to to you and all your family.
Alison , Jon's wife UK
Good luck with your referral to Prof lodge , he and his team are wonderful you could not be in better hands
I was very interestedto read that you are going to Germany to try DC therapy . Jon's brother-in -laws brother is a GP in Germany and he had mentioned something about that ,( he has a friend who is a liver specialist in Hamburg) when we asked him for advice , unfortunately we were not in a position to have treatment in Germany.
I wish you really good luck and will follow your progress on the site with great interest.
Thanks for your message
PLEASE do not have any regrets about letting us know about Proff Lodge , He and his whole team were absolutely wonderful and I too am convinced he is the best Liver surgeon in the UK and we did lot of research and read various articles by him , including one specificallly on the OP Jon had and were fully aware of the risks and the Odds.
Jon was just very unlucky to get so many post op complications and to have them so severely . The encephalopathy and paranoia was so severe he ran out of the HDU twice, the first time pulling all his IV lines and epidural line out , convinced thet the staff were poisoning him and despite being warned about this it was very scary for both of us .
It gives me comfort to hear that your operation was sucessfull because this is the only real option available in the UK and it needs to work .!
Any money donated to Jon at the funeral will go to a fund at St James Leeds to help fund research and hopefuly improve the Odds in the future
I would be interested to hear if you suffered any degree of paranoia or anxiety after your operation
Once again many thanks and good luck for the future to you and your family
just for information
I have found a fund run by leeds university hospital called "Rays of light" this means the money raised will go to the unit that treated him and gave him a chance even though the outcome was not as desired
This also means that the research will concentrate on the UK where information and opinions re CC seem to be quite negative