Thanks Jeff. Will look further into whether we are able to receive this. My uncle his first chemo treatment on Friday - He felt quite sick on day but wasn't so bad the following day. Thanks for your reply x

Thanks for your advice ....quick question- can you tell me what 3D IMRT is ...

Thanks Kris- We'll look into the radiation therapy.  As for sitting around - he's doing plenty of that and the pain drugs seem to be kicking in a little so that is helping.  Friends come to visit quite regularly which is great when he's up to it.

WEll.. It'll be a year on 4th June when we were told that my uncle has CC and 3 to 6 months to live. That was a week after his third child was born! What a year! Well I'm happy to say that my uncle is still here with us but it has been a really hard road. Unfortunately his latest scans are showing mets in the lung and unfortunately the lymph node are effected and there maybe growth on his vertebrae -he'll be having a one scan in a couple of weeks to confirm. For the past three months his pain has slowly but sure been increasing to the extent that at present it is quite unbearable for him. He's recently been put on Morphine 10mg and Ibuprofen 600mg but it has had little effect. Tee other added complication in his condition is that he now has collangitis. I'm really concerned about this as his pain is starting to focus in this area and again it is really very intense. After reading about it I

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I havent been on the site for a while - but yes - the website looks fantastic! xx

Hello all, on a positive note we all actually feel so much better with my uncle's health improving. He was re-admitted back into hospital 4 weeks after his liver resection with some awful symptoms. They said it was fluid build up, which I believe to be ascites. After draining this fluid he is doing so much better. He

Mary - thanks for sharing this. It truly is helpful. My uncle was diagnosed with CC in April and has had surgery which was just about successful. However, it has been 4 weeks and he is so very thin and gaunt in appearence. He was released 3 weeks after his surgery but after a week at home feeling very sick and unable to keep any food down, and also having temperature/shakes/shivering/ pains in his back and chest he was readmitted. They've discovered fluid on top of his liver which was pushing his lung up and leaving him with the above syptoms. They're also doing tests to see if theres anything else wrong with him.
Your story has instilled hope within me, that my uncle too will in a year after his diagnosis be able to enjoy his sons first birthday; that he will get past this traumatic time that we're all going through and build up enough stregnth to get a little bit of normality back into his life to be able to enjoy those prescious moments which we all take for granted. Take care and god bless xx

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(2 replies, posted in General Discussion)

Jules - thanks for getting back to me. Day by day is just what we need to do, i saw him later today and he seemed much better than yesterday. Its so nice to hear that your did feel better after 8 weeks or so, it does help listening to different experiences, if anything its encouraging. I will definitely take your advice -the carbs build up is good tip - do you serve it with anything?

I want to stick with Dr Prasad and hopefully by my uncles next appt he will be feeling better. Its just the billirubin level thats scaring us at the moment.

Im glad to her that youve been take your dad a way to Cornawall and just create some happy memories amongst this rollercoster ride.

Thanks - your advice ss definitely helpful. x

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(2 replies, posted in General Discussion)

WEll, my last post was about my uncle having had his surgery. The surgery was very difficult but the surgeon accomplished what he intended even though it took 11 hours. I think the added complication was that the cancer had spread to his lymph nodes. After 3 weeks he is now back home. His billirubin level has been up and down, his last count was just above 200. The bile is draining in to the bag but wont be sure whether the level is decreasing until his next blood test. We are now realyl very worried about this as its that the consultant cannot do anymore evasive treatments to help this. He will be going back to Leeds for his follow up next Friday - my uncle's not looking forward to the journey as it is around 2 hours in the car and each time it really takes its toll on him. I'm not sure whether we should ask for hm to be referred back to Birmingham. The problem is that we trust Dr Raj Prasad - he's been briliant so far. Now if he's referred back who knows what kind of care he will get.In the mean time my uncle has been feeling very sick - and was vomiting yesterday. I hate to see him so utterly helpless. Like I said he's such an active person, and a hands-on dad.

We've also found an oncologist who speciallise in chinese herbs. Ive had a couple of chats on the phone with him and feel confident in letting him treat my uncle. He was recommended by a friend of a friend who also had cancer- Anyways this person John Hall from 'East meets West' has helped with with their quality of life and prolong peoples lives. He is one of four who practices in a way which ensures the eastern medicine is complimentary to the western medicine. He has a database of all the herbs he uses and their chemical reactions etc.  Again the distance will be difficult - he is based in Norwich which is a good 2+ hours away!! And he'll probably require to see my uncle at least every 2 weeks in the beginning. 

Its just so hard seeing him like this. Yesterday he didnt even wnt to talk  to any one on the hone as he just felt so sick and felt he didnt have the energy. Emotionally he has been very down, I just hope he's not loosing faith as I know its on a very difficult ride.

We're also not too sure about what to do with his diet. Before CC he was on glutenfree and dairy free diet as he has ulcerative collitus. This has been hard to sustain b/c of his loss of appetite. He is having freshly queezed carrott juice and other fresh juices. And is drinking his forti/nutri-juices. We just dont know what to give him as we dont wnat to further uset his stomach!

We just feel very confused.

Any advice is appreciated xx

Thanks for your messages. I'm not sure if it was more than a liver resection.
He's still in hospital, his billirubin level was falling after the surgery but then rose again last week. They think it maybe because of an infection but the antibiotics don't seem to be doing much however the level has fallen from 320 to 306. We were so happy when it had gone down to 215. Not sure what happened! We do know that his Consultant is really good and is trying his best for him. On the plus side my uncle sounds very well when I talk to him on the phone, and his itching has stopped which in itself is helping with his quality of like.

Thanks you so much for your prayers. We have also had tremendous support from our community and I do feel that these prayers are hleping us all though. May God continue to help you both and your families also.

Just thought I would post a quick update. My uncle had surgery/liver resection in Leeds on Thursday.. it went as well as could be exected - took 11 hours! the waiting felt more like days. He's doing okay so far, but he did give us a scare on the night of the surgery as his blood pressure dropped drastically. Internal bleeding was ruled out after an ultrasund - they thought it maybe due to the epidural and dehydration. He is now awake but again its the waiting game to see whether the remaining liver is funtioning. Things are more complicated because he had this operation in a jaundice state - his billirium level was 386 at one point but then 311 just before he went in. The other thing concerning me was that he also passed some blood in his urine. Not at all sure what this means yet- hopefully its nothing but I cant help but feel concerned. hopefully I'll get a chnce to post another update soon. God bless xx

Geoff- your pst was very helpful (as has been everyones - so thanks to all!) I'm afriad I don't know what my uncle's billirium level is but will find out. But I do understand what you're saying about being part of the 10%. It really does frighten me, and its awful to think that everything you attempt to do just might not be enough. My uncle seemed better during the day yesterday, but he is himself thinking that if he feels so week after the laparoscopy (i think thats the term for the exploratory surgery?)then how will he get through after the major surgery.  By bedtime he was feeling very nausious.

We were wondering whether there would be an adverse impact if the major surgery was delayed by a week. On one hand the time may help to build him up but then on the other hand it may have an adverse effect becuase of the jaundice!

Thank you to you all for your messages - it makes all the difference as you can see that you're not alone in this. I am really quite new to this and im certain I wont have all the terminology correct ert. My uncle is under a consultant called Dr Raj Prasad who is in Prof Peter Lodge's team at Leeds. I have to say Dr Raj Prasad has been really good so far. Each time he's met with us, he's taken the time out to talk properly explaining in detail what our options are and then what e cae across during the exploratory surgery. It's just that we are so caught up in emotions that some details just go over your head. He has explored the different medical ways of relieving my Uncle's Jaundice but has been unsuccessful. When he was telling us this I could see that he felt gutted that he couldn't tell us something different.

He did outline all the various ways of relieving the Jaundice in the medical route but all options were very quickly eliminated. I just feel really helpless, but I'm trying to remain positive. My uncles just so itchy though. My other uncle is elping mby giving him regular massages, which I think helps circulation but also calms his itching a little. I just know how I feel when I'm itchy, and its horrible to know that he is itchy 24-7.

There is a tumor on the liver, in the bile duct and lymph glands. Before this major operation we just wanted to explore alternative routes to at least see if we can help the jaundice. But I guess we're just clutching to straws. Am i just wasting my time looking into medicinal / herbal treatments, as this obviously can't move the obstuction in the bile duct? We'll probably try anyway. Jeff, thanks for your 'take the bull by the horns' and 'keep your pecker up' - Will certainly try to.

I just wanted him to have a better chance during the major surgery, and hence was looking into alternative treatment. I will note the various suggestions  and see what we can do (if anything!). Thanks to you all though - I really do value everyone's support.

My uncle was diagnosed with CC about month a go. They discovered it becuase of his Jaundice state. The hospitals here in Birmingham said that they would not be able to operate and they said he would have up to a year to live after they releived his jaundice.

We got him referred to St James in Leeds for a second opinion. The consultant there said that he would relieve the jaundice state with a stent and was willing to operate on him to remove the tumour. However, the radiologist disagreed with the Consultant and said that he shouldn't do the procedure to releive the jaundice. Now after this the consultant did an explorotary operation and tried to see if he could surgically try to remove the Jaundice. Unfortunately it was a no go. My uncle's bile ducts are too damaged.

The consultant has now said that we he will attempt the operation even though my uncle is in a Jaundice state in a couple of weeks time but has also told us not to pin our hopes on it. There is a 10 percent risk that my uncle may not recover frm this operation, and even if it is successful it may give him another 18months of life.

We, his family together with my uncle have decided to give the operation a chnace. Its like he says 'do i have a choice'? He has a 5yr old son, 3yr old daughter, and a 5week only baby boy. He as every reason to live and fight against this desease to prolong his life. It breaks me to peices to watch young family.

If anyone can offer me any advice on how to build up his strength over the next 10 days or alternative treatment to relieve his jaundice to get him fit for this major surgery please contact me IMMEDIATELY. 

I thank you in advance for taking this time to read the post and pray that you have the strength to get through any difficult time that you and your family may be going through.

A x

My uncle was diagnosed with CC about month a go. They discovered it becuase of his Jaundice state. The hospitals here in Birmingham said that they would not be able to operate and they said he would have up to a year to live after they releived his jaundice.

We got him referred to St James in Leeds for a second opinion. The consultant there said that he would relieve the jaundice state with a stent and was willing to operate on him to remove the tumour. However, the radiologist disagreed with the Consultant and said that he shouldn't do the procedure to releive the jaundice. Now after this the consultant did an explorotary operation and tried to see if he could surgically try to remove the Jaundice. Unfortunately it was a no go. My uncle's bile ducts are too damaged.

The consultant has now said that we he will attempt the operation even though my uncle is in a Jaundice state in a couple of weeks time but has also told us not to pin our hopes on it. There is a 10 percent risk that my uncle may not recover frm this operation, and even if it is successful it may give him another 18months of life.

We, his family together with my uncle have decided to give the operation a chnace. Its like he says' do i ave a choice'? He has a 5yr old son, 3yr old daughter, and a 5week only baby boy. He as every reason to live and fight against this desease to prolong his life. It breaks me to peices to watch young family.

If anyone can offer me any advice what so ever on alternative treatment to relieve his jaundice and to got him fit for this major surgery please contact me IMMEDIATELY. 

I thank you in advance for taking this time to read the post and pray that you have the strength to get through any difficult time that you and your family may be going through.

A x

My uncle was diagnosed with CC about month a go. They discovered it becuase of his Jaundice state. The hospitals here in Birmingham said that they would not be able to operate and they said he would have up to a year to live after they releived his jaundice.

We got him referred to St James in Leeds for a second opinion. The consultant there said that he would relieve the jaundice state with a stent and was willing to operate on him to remove the tumour. However, the radiologist disagreed with the Consultant and said that he shouldn't do the procedure to releive the jaundice. Now after this the consultant did an explorotary operation and tried to see if he could surgically try to remove the Jaundice. Unfortunately it was a no go. My uncle's bile ducts are too damaged.

The consultant has now said that we he will attempt the operation even though my uncle is in a Jaundice state in a couple of weeks time but has also told us not to pin our hopes on it. There is a 10 percent risk that my uncle may not recover frm this operation, and even if it is successful it may give him another 18months of life.

We, his family together with my uncle have decided to give the operation a chnace. Its like he says' do i ave a choice'? He has a 5yr old son, 3yr old daughter, and a 5week only baby boy. He as every reason to live and fight against this desease to prolong his life. It breaks me to peices to watch young family.

If anyone can offer me any advice what so ever on alternative treatment to relieve his jaundice and to got him fit for this major surgery please contact me IMMEDIATELY. 

I thank you in advance for taking this time to read the post and pray that you have the strength to get through any difficult time that you and your family may be going through.

A x

Mary - Happy to hear the success that your husband has had with his treatment. It gives me hope... My Uncle has too only just been diagnosed. I'm so afraid for him as he is sooo young and has 3 infant children. He has Jaundice and they are going to unblock the Bile Duct. we are trying to get him referred to Leeds for a second opinion as they are sayinf my uncle  his GP has been of no help what so ever - we really felt the postcode lottery effect this morning when he said he couldn't refer him outside of this area. we are willing to go private to get this initial consultation but it just feels as if the system is against us. i pray to God that he shows us which direction to go in. I would appreciate any advice about where we can get treatment for his cancer as we are willing to raise funds to try as extend his life - I, as his neice & friend just want my young cousins to be able to be old enough to remember him before he goes.

Please can you share with me what you were told about your husband's chances when he was first told about CC? All advice is much appreciated...

Fathers Daughter wrote:

I am sorry to hear about your Dad.  You were with him through it all and I am sure he was grateful to have you by his side.  He knew how much you loved him.  I hope you can find some comfort in that. 

I am taking your advice to try to just be there for my Dad as well.  Unfortunately, he said he feels like his health is all we talk about anymore and he says he is boring everyone.  He has also made the decsion to forgo all treatment.  I think it is because he feels like he is a burden or maybe he is just scared, I don't know.  He won't talk about it to me anymore.  He doesn't want me to even take him to the doctor anymore. 

I actually liked the idea of taking him to doctor daily because selfishly I could spend more time with him without looking like I was hovering over him.  I don't know if he needs to mentally sort things out so I am trying to just give him the same respect I gave him when he was healthy by respecting his decision but I know I will lose him sooner without treatment.  It makes me panicked and helpless.  I pray he will change his mind.

I know it wouldn't be fair for God to let me keep my Dad forever when the rest of the world has to lose thiers but it doesn't stop me from asking Him for more time.   Especially after reading your Easter post, I know that I need to just be grateful that I have him now.   It's just so hard to feel grateful when the feeling of fear and sadness is so much stronger. I am so happy to be able to spend this Easter with him and yet I am so sad because all I can think about iis that this is probably the last Easter I will spend with him.   Then I geel guilty for being so ungrateful for the time I do have.  I guess I have some things to sort out myself. 

Thanks for your advice.

My Uncle has too only just been diagnosed. I'm so afraid for him as he is sooo young and has 3 infant children. He has Jaundice and they are going to unblock the Bile Duct. we are trying to get him referred to Leeds for a second opinion as they are sayinf my uncle  his GP has been of no help what so ever - we really felt the postcode lottery effect this morning when he said he couldn't refer him outside of this area. we are willing to go private to get this initial consultation but it just feels as if the system is against us. i pray to God that he shows us which direction to go in. I would appreciate any advice about where we can get treatment for his cancer as we are willing to raise funds to try as extend his life - I as his neice & friend just want my young cousins to be able to be old enough to remember him before he goes. God bless & I hope you are able to get the help needed for your dad.

If anyone else comes across this pos any advice you have will be very much appreciated. I will also look up the Mayo Clinic and MD Andersons Website - if there are otehr specialist centres that deal with this condition please let us know. Also, if you know about the whole world of referrals or processes please get in touch. Thanks!