alison
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Hi crider
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 thisAlison
Hi Kate
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,
Alison
HI Sara
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.
regards
Alison
Maggie
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
Dear Celia
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
maggie
Good luck with your referral to Prof lodge , he and his team are wonderful you could not be in better hands
Alison
Geoff
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.
Regards
AlisonDear Geoff
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 futureI 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
Alisonjust 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
Alison
Hi Stacie
I have just posted in the remenbrance section about my husband Jon who sadly passed away on 5 Dec. I have already have had lots of enquiries from friends and relatives about the funeral and flowers , myself and my daughters had already decided that he was not a “flowers ” kind of man and would rather that the money spent on them be put to better use and that we would like any money we recieve to go to something directly related to Cholangio and resarch into drugs , treatment etc, . We live in the UK , so I would like your advice on how to go about this
Many thanks
Alison
hi Kathy sue
My husbnd Jon also just has a tumour in his liver not in the bile ducts , this was confirmed on biopsy
AlisonHi cps
My husband has cc, he also was under Professor Cunningham at the Marsden and was on the ABC02 trial, he was having Gemcitabine only , this stopped the tumour from growing , but there was no shrinkage .
We had a 2nd surgical opinion and it luckily it was positive and he is to have surgery next week.
I would agree with Jules that chemo is regarded as mainly ineffective in the UK and that is it very important to seek as much advice as possible from as many sources as you can find
We too have learnt to ignore the gloomy statistics
AlisonJules
Good news , Prof Lodge has said he can operate , jon needs to have a PET scan and a laporoscopy first , but fingers crossed , operation should be the end of Oct . will be done at St James’s in Leeds
Thanks for your good thoughts
Alison
Jules
Jon had his 2nd scan last week , got results today , no change, suppose thats good ,at least no spread. He has appointment with Prof Lodge on Weds in Leeds .
Hope your Dad is doing ok .Alison ,(Jons wife)
HI Mira
I was sorry to read about your father , but pleased to see that the Drs now feel he is ready to have chemo despite his symptoms . As he has decided to have the chemo treatment you should not have to accept the inevitable as suggested , he has decided to fight on and needs all your support .
My thoughts and good wishes to you all and I hope your Father can tolerate the chemo well.
Alison
