jules

frogspawn,

I think you are onto something here. My Dad’s uncle died from ‘liver’ cancer. That was some time ago, and the circumstances are vague, I’m guessing it was cc. (My Dad died from cc 23/9/2007)

I went to my gp about this and I was referred to a genetic consultant who was dismissive. I do not feel reassured. So little is known about this disease how can they be so sure?

I did come across a clinical trial in Switzerland asking for blood relatives of cc patients to trial some type of screening – If I recall correctly it involved taking samples of the cells lining the bile duct for testing – I think it was called brush cytology – or something like that.. I will try to dig it out.

surely if we are wanting to make some progress towards a cure/early diagnosis then this needs to be taken seriously. Thankyou for your informative postings on this subject.

Dear Stacie, Rick, Marianne and family,

I just wanted to say that I think this looks amazing. I love the home page, I think the improved format is more uplifting, welcoming and clear in its mission. Thankyou for all your hard work. Thinking of you all on Mark’s birthday,

Jules

Tom and Ron

By all means conduct research – I certainly did when I was considering who to go to to help my father, however I would say that it is advisable to only use reliable sources when researching – eg medical journals that the dr may have contributed to (ask him if he has co-authored any articles), I also talked to other Drs whose opinion I respected (eg when we went abroad for treatment I consulted with the head of the immunotherapy unit here at St Georges Hospital, London). Personally, I would not consider media driven reports reliable authority.

I hope this helps you in your decision, very best wishes,
Jules

I think that it is time to stop all of this. I think we have to be clear about the aims of this site – we all want to raise the profile of cc and to work towards a cure. (Please think of the patients on this site relying on us to carry this forward). We should not be put off from sharing hopeful avenues however we should be careful about the context in how we do this. (Please see some of my dad’s postings re Prof Lodge/surgery – we were clear to warn of the risks involved with surgery). Nobody is a miracle worker. This is a difficult disease, however Dr Canady is able to offer hope to many patients.

As for the privileges system issue – correct me if I am wrong, but is this not a system that is clearly open to abuse and exploitation? we have all come across professional rivalry.

Jules

truth4u

I would just like to ask you for some factual evidence to substantiate your claims against Dr Canady. I think that you should bear in mind that successful surgical resection offers alot of hope to cc sufferers in the fight against this horrendous disease. Of course, it should be stressed that this surgery is no small undertaking and that does carry risk and that the recovery may not be smooth (indeed it rarely ever is). I am sure that any good surgeon would explain clearly the risks and prepare their patient fully for the operation.

I would urge anybody contemplating surgery to seek opinions from experienced liver surgeons only and to question them on experience with cc resections (how many have they performed?) – also consider researching into your surgeon (read published articles that he has contributed to for example).

The debate concerning aggressive surgery rumbles on in the medical press. However I have noticed a shift in opinion more recently and it would appear that it is more widely accepted that an aggressive technique offers improved patient outcomes.

I do understand Neill’s eurphoria concerning his wife’s successful surgery and I wish her the very best for a speedy recovery.

Jules

Carol

I am sorry to hear that your husband is so low. My Dad suffered terribly with depression during his illness and I used to try so hard to lift him out of it – chattering away most of the time about anything and everything, desperately trying to distract him, it was exhausting. He was very bitter and angry and really he had every right to feel that way and he would get snappy with me. Sometimes I would just sit with him and hold his hand and we would curse this disease together, I would tell him that I was sorry, that I would do everything I could to help and that I would be there for him. I tried to focus on simple pleasures. My dad hated the cold – I would light a fire for him, he loved that. We would sit and drink a cup of tea together, watch a favourite TV programme, I would encourage him into the garden if it was a nice day, when my Dad was very low he wasn’t very chatty although he seemed to like me to sit next to him, to just be there.

Carol, I know that this is the hardest time ever for you right now, there is no right or wrong way, we just try to do our best faced with this nightmare situation that is all we can do. I remember once saying to my Dad that I was sorry for always trying to cheer him up, that I recognised that my attitude must leave him very alone with his fears.. that opened him up to talk a little, although I think that he was always thinking of me and only telling me as much as he thought I could cope with. I regret now that he had no outlet for his darkest fears. Is there anyone outside of the family who could talk to your husband?

I don’t know if anything I have written will help you – I just wanted you to know that this is a recognised state of mind with this disease (and any other cancer I suppose) – I would try to look at it that it is the cancer he is mad at not you (if he gets snappy) and try to find an outlet for his fears and to accept that he might not want to talk, that by just being there, sitting with him is a comfort I am sure.

I hope that the surgery goes smoothly for him and that this can give him some hope for the future, as you rightly say a successful resection offers real hope in the fight against this disease, I hope that this will lift his spirits a little.

Thinking of you both,
Jules

Dear Karen

I am so sorry that you are having to go through this with your mum especially having lost your Dad and other close family members so recently. I just wanted to give you some information that might help:

– your mum’s fluid can be drained (a simple and painless procedure that needs to be done in hospital usually over a 24 hr period as the fluid should not be taken off too quickly to avoid drop in blood pressure) – this could be combined with the use of diuretics – spironolactane and frusemide in combination usually works for about 50% of patients. Usually with drainage of fluid it will accumulate quite quickly afterwards although I found that the diuretics worked quite well with my Dad. Also if your mum’s ankles/legs are swollen she should sit with her feet raised above hip level and when she is in bed you might want to try placing a pillow under her calves.

– as regards stents you might want to ask your mum’s Drs if they would consider a metal stent as these tend to be less prone to infection and blockage, generally plastic stents are used as they are less expensive and I found that I had to push hard for a metal stent to be used. If the stent works well and the bile can be drained then your mum’s comfort should be eased considerably.

I am afraid that muscle wastage, lack of appetite, nausea and extreme lethargy are all too common symptoms with this disease. The best that we can do as caregivers is to ensure that our loved ones are as comfortable as possible, I know this is an utterly exhausting time however if you are able to fight your mums corner with the Drs and ensure that she is provided with procedures that can ease some of the symptoms then you will be comforted by knowing that you have done your very best for her as it is clear that you are already doing this by finding this site and researching this disease.

Jules