jules
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your diet sounds very nutritious, i have bought the ingredients to make the drink for my dad, he says that he is looking forward to it. it seems obvious to me that diet plays such an important role. i have always taken great care with my diet in that i am vegetarian and will only buy organic, since my dad became ill i find myself examing ingredient labels on everything very rigidly – i now use bicarb soda and lemon for cleaning the bathroom and but tioletries from the health shop, i know that there is little i can do about pollution but i do have control over some elements of my life.
alot of research into this disease seems to originate from the far east where incidents are far more prevalent and you do have to wonder why it is spreading to the west. Is your husband able to exercise? – my dad has been enjoying getting out for a walk but will only go out when the sun is out – he really does feel the cold.
speak soon
jules
thanks for trying again – i am unable to open the attachment as it has been ‘viewed as unsafe’ by my computer for some reason.
You must feel encouraged by the blood results, it sounds as if you are working hard on diet and lifestyle, all the hard work is starting to pay off. My Dad was put in contact with a firend of my brothers who suffered primary liver cancer who managed to shrink his tumors by eating a macrobiotic diet (the meals were prepared specially for him) i think macrobiotic includes lifestyle techniques too. I tried to encourage my dad to try it but he is reluctant as he has been told to ‘just eat what you feel like’ and his appetite is not good so he feels that he wants to eat whatever and whenever however he has become a vegetarian.
Did Prof Cunningham give you an idea of which chemo drugs are working well in trials right now? i think that it is interesting to note that that most chemo drugs used on cholangio are used initially for colon and pancreatic cancer, surely then it would be an idea to find out the latest drugs being used for these cancers and try them? I’m sure Prof Cunningham is very busy, his secretary told me that he sees alot of cholangio patients. I just wish that they could focus more on this rarer form of cancer rather then leaving the gap in provision as wide as it currently is. The numbers of cholangio patients are increasing – my Dad’s GP has told my parents that he has 3 patients suffering cc (my parents only live in a very small village)..you start to wonder why. My Dad travelled alot to the Middle East during his career, i have read that cc has been linked with this ‘liver fluke’ present in these countries. No point going over this now i suppose, by the way, if you don’t mind me asking how old is your husband? – my dad is 61.
hoping you have had a reasonable day..
jules
hi patricia,
i don’t seem to have recieved the email with the recipe – thankyou for trying. Yes, the chemo would be used as a ‘mop up’. What is X119? – is it a form of nanotherapy or immunotherapy? The pace of research in this area moves so fast some drs seem more up to date then others and i feel like i have been on a very steep learning curve! it helps to have a good GP, my dad changed GP’s after his original GP continually let him down by failing to diagnose him last year and sending him away repeatedly even though he was bright yellow and in agony with the itching. The GP he has now is very helpful. Is your husband at home now? it does get tiring when you have to keep chasing up treatments. I found when my Dad was in Hammersmith that the communication was dreadful – suddenly porters would appear to eg – take my dad for a chest xray and nobody would have told us about it, it adds to the anxiety.
I have read alot about PDT and it sounds really promising.
jules
Is your husband comfortable? – has he got a stent fitted? – initially my dad had raised bilirubin back in july last year when this all started and they were poking things around too and having great problems inserting a stent, eventually they fitted a metal one, initially they wanted to use plastic and we found out later that metal would have been more effective, they should have just inserted metal to begin with but were reluctant to on cost grounds. You seem to waiting a long time to start any treatment, is it a randomised trial? – has your husband been allocated to a group? Your husband sounds strong mentally.
I am interested to learn that you are also consulting Prof Cunningham – I was hoping that we could have an appt to see him, however have now been told that he only gives ‘paper’ second opinions via the GP – i will let you know what his advice is to my dad. Chemotherapy is a minefield, they just seem to be throwing anything and everything at it – if its worked on a more common cancer they’ll give it a go. It is very hard to make any decsions.
kind regards
jules
hi, everything was alot more optimistic today – my dad has been told that they think the enlarged nodes could actually be due to all the disturbance of the 2 operations and that it is unlikely to be regrowth of cancer in such a short space of time. the surgeon is scathing of the RFA treatment that my dad had during the first op – he says that RFA spreads cancer as they have to stick probes into the tumor to ‘cook it’ and that sticking things into the tumor helps to spread it – i have also heard that this is the reason why they do not do needle biopsys anymore. anyway, so for now we have a reprieve – my dad is going to see an oncologist, Prof Cunningham at The Royal Marsden specialises in gastrointestinal cancers. At Southampton they are offering a trial of xeloda for post resection patients. There is alot to think about. For now things seem more positive and we are all very relieved. How are things for your husband?
Jules
favia,
how is your mother doing? – how did you get on at cancer treatment centers of america? – i am sorry that your mother’s cancer has returned i hope that you have been able to get some treatment for her to help. Please let me know how you are getting on.
best wishes
Jules
patricia,
thankyou for offering to send me the recipe for the drink. I will let you know how we get on today. It sounds as though you are doing a great job at helping to build your husband up. I am sorry that they decided that they could not remove the tumor – have you thought about getting a second opinion about this? – i can understand that your husband would be reluctant to undergo a second op, my dad found it very hard, however it was very different the second time, the nurses at the Bupa Hospital Leeds were so caring. Such a contrast to Hammersmith which was a nightmare. When does your husband start the PDT?
jules
hi,
my dad had RFA (radio frequency ablation) during the first op that he had, at the time they thought that the tumor could not be removed and did it ‘to protect the healthy part of the liver’ – at the time my dad did suffer some back pain, i don’t remember it helping ease the pain, when my dad had a ct after the RFA it show that the RFA had killed alot of the cancer cells, however the second surgeon was critical of the RFA as he said it made his job harder to remove the tumor. However i don’t want to be too critical of something which could help you, reponses to treatment vary, at the time that my dad had the treatment he was very poorly and it was encouraging to see that the RFA killed off a large portion of the tumor.
i hope this helps, best wishes
jules
Patricia,
the drink that you are giving your husband sounds very nourishing, my dad has build-ups, he has lost alot of weight too. it is interesting that you have been told that your husband will never regain the weight that he has lost – i wonder why they think that this will be the case? – my dad has lost alot of weight also and now really feels the cold. the PDT sounds interesting especially if it could shrink the tumor, then maybe your husband could have it removed surgically?
jules
he came over to my house today and we were able to have a walk together on the beach this morning, it was lovely and sunny. He is not eating very well and is very tired all the time, also today he was very low, i think mainly because he was suffering from terrible nausea which really gets him down – however i think this is mainly due to the antibiotics that he is taking, i think he is also dreading the appointment tomorrow. I try to reassure him but i also want to be careful of not just dismissing his fears, i want him to feel that he can talk openly about how he is feelings however at the same time i really miss the person that he was, so strong and confident and i feel angry that that person has been taken away from me. I hope that one day that person will return. I checked out the Lance Armstrong foundation website – liverstrong which was a real comfort – so many inspirational stories.. however i don’t have to just look on these websites to find people who have beaten the big c – one of my closest friends is now clear of breast cancer after having a mastectomy 5 years ago, another one of my friends father suffered pancreatic cancer and is still going 2 years after being told that he had 6 months to live, he went into a clinical trial, the tumor shrank and he was able to have it removed surgically. I would never accept the opinion of one dr on the situation. i have been thinking of you and your husband, have you thought about getting a second opinion as to whether the tumor could be removed surgically? – my dad’s tumor had spread beyond his liver, stuck itself to his lung (destroying the diaphragm which had to be reconstructed), wrapped itself around the vena cava and adhered itself to his bowel and yet the surgeon was able to remove it. The surgery was tough, i am just hoping it was all worth it and it has not returned so soon.
jules
patricia,
thankyou for your advice. You are right – i know, the only way to face this and get through the days and weeks ahead is to adopt a positive frame of mind and to confront it head on. yesterday was a low day – i feel a bit better today. I think you are right about the statistics – the drs just don’t know – all patients have various strengths and it is impossible to generalise. Your husband sounds like a strong person, i admire his approach, and i think my daughter would empathise with your daughter regarding her poster!
How is your husband? have you sought a second opinion? what is his current treatment? – I have come across the book you mentioned, it is very good, I agree and I would love for my Dad to take an interest in complimentary therapies, at the moment he is dismissive and has faith in the conventional route, I am working on it.
with best wishes
jules
i think it is very hard to live with the uncertainty that we are faced with – my dad had a resection and they now have found some enlarged lymph nodes – they think it is due to infection but they don’t know, i think he will have some more tests. before the op my dad was told that he had a 50% chance of being cured and a 50% chance that the cancer could come back 2-3 yrs down the line. The surgeon told us that he had just discharged a patient from his ‘books’ who was 10 yrs post op after this kind of surgery! – i think they just don’t know what the chances are. it is very hard to live with though. you want to hear that you are cancer free and that is the end of it, in truth i know that that is not the reality, however i hold onto the fact that advances in tackling cancer have meant that patients can live with this dreadful disease for years, that it can be managed and controlled like a chronic disease eg diabetes. i think we have to just try to make the most of the time we have, but it is hard i know. right now i feel a mixture of emotions, i’m scared and angry at this illness. I want my dad to fight it and win.
hi, in my dad’s case the tumor had spread from the bile duct into the liver and was actually covering about 60% of the liver. During the first op the surgeon gave him RFA (Radio frequency ablation) which did kill off alot of the cancer cells however the reason why the first surgeon did not remove it was because he said that it was too dangerous as it was too near to the vena cava.
Prof Lodge operates with aggressively on these tumors. We consulted surgeons in the US (Sloan Kettering and Mayo Rochester) nobody was prepared to operate. We we referred to Prof Lodge through Prof Williams at the Cromwell Hospital. Prof Lodge told my Dad that the tumor peeled away quite easily from the artery.
My Dad had a CT scan this week – the radiologist had some concerns about enlarged lymph nodes, however they think that it is due to infection (my Dad keeps getting raised temps) – (if anyone else out there has any info that may help on this then please reply). Prof Lodge said that my Dad will not need chemo, he was quite dismissive of it also. Just before the second op my Dad was randomised onto a trial at Hammersmith to recieve a course of gemcitabine and cisplatin, we were told that the best that chemo could do is to ‘extend life.’ I am concerned that maybe my Dad should be seeing an oncologist – reading some of the posts on this site and others it would appear that some patients are held stable on chemo for years and years.. could anyone out there advise me if they have any info on some of the more promising drugs available? – i know that we are limited in the UK as to the standard of chemo drugs available however we can get hold of promising drugs privately.
Patricia, I would advise you to seek second opinions if you can – keep on challenging and questioning the drs and get informed.
All the best to you and your husband at what is a very difficult time.
Jules
patricia,
I am very sorry to hear about your husband. I hope that he is doing ok. We live in the UK also – i have not met anyone so far who has this rare type of cancer in the UK so I am very interested to know who is treating your husband.
my dad (61) was diagnosed with cholangio in July 05 at The London Clinic, Harley St. He was admitted straight away to Charing Cross then transferred to Hammersmith for surgery. The surgeon who performed the first op said that he could not remove the tumor. We got a second opinion and my Dad was referred to Prof Lodge in Leeds. (St James Hospital). He said that the tumor should have been removed first time round and performed a successful second op on my Dad. My Dad had a CT scan yesterday – we are waiting for the results. I feel very annoyed that my Dad had to go through the first op needlessly and I believe that the surgeon was negligent. Prof Lodge was fantastic and everybody in Leeds to great care of my Dad (he had the surgery at the Bupa Hospital, Leeds).
Some peoople say that the cancer will come back, some say that my Dad could be cured. I know that the second op has given my dad the best chance and i just hope that this is the end of it. Sometimes it is just so hard though to try to get on with life. I feel annoyed that we are so behind in the UK in terms of the chemotheraputic regimes available, this is especially evident when reading the posts on this board.
Jules
