April 3, 2013 at 7:52 pm #60645lainySpectator
Joel, the most important thing right now is Dad’s comfort. Can you get in touch with his ONC? I am not sure of the protocol in the UK but something needs to be done ASAP so that the pain gets under control. The pain zaps his energy needed to fight the CC. Also pain that is not under control is harder to control later. The best RX will always be the Grandchildren! Best of luck and please let us know how it goes.April 3, 2013 at 7:38 pm #60644lalupesSpectator
I’m in London. My sister was treated at Kings and had chemo at Guys. Would you like to talk? Please feel free to contact me via the email link next to my name if you wish to.
My very best to you and your dad.
JuliaApril 3, 2013 at 7:33 pm #60643gavinModerator
Great to hear from you again. And no apologies are needed from you re your not posting sooner, we sure know what life is like for you at the moment.
As to your dads pain, is this relatively new this pain and what if anything is he taking for it? Also, when is his next scan due? I strongly recommend that you get a Mac nurse sorted for your dad if he wants one as they will be a great help for you in many ways. The district nurses are great in what they do etc, but they are not specialist cancer nurses and a Mac nurse will offer much more for your dad. I think as well that they can prescribe pain meds etc or at least tell the gp to do so if needed, amongst other things.
I hear what you are saying about your dads care team and it not being joined up right now and I hope that you can get to the bottom of this and get it sorted. Once again, a Mac nurse would help here as she could be very helpful in getting things sorted and organised. My dads nurse was great at doing stuff like that for him and also at kicking peoples butts if need be! And in many instances, she was the first person that we would call if things needed done etc. Sorry if you feel that I keep banging on about them but I do think they would be of great help to you all here.
Yes I know what you mean about some days being better than others, thats very common and my dad had tons of these. We used to try and make the most of the good days and wait for the bad ones to pass. Tiredness and your dad sleeping a bit more is also very common. My dad used to get very tired and nap for much of the day, and that too is very common.
Your dads seeming distant could be his way of dealing with things and my dad was like that some time as well. He never really liked to talk much about stuff but would do so if I pressed him or brought stuff up in conversation. We all deal with things in a different way don’t we. My dad started going to the Macmillan Day Care centre here. This was something that I didn’t think he would do when the nurse suggested it for the first time but he ended up loving it. I took him up for the first time to see if he would like it and they explained what happened there etc. Well my dad ended up going twice a week and he loved it and got tons out of it. Maybe that is something that your dad would like? From what you say, your dad sounds like he was full of life and up for things so maybe being around others in his situation and talking with them would help? Just a thought with that.
I know that all of this is hard to deal with and experience Joel but you are not alone now, we can help.
My best wishes to you and your dad,
GavinApril 3, 2013 at 7:19 pm #60642marionsModerator
Joel…it might be a bit of both for your Dad – the physical aspect of the cancer and the emotional impact it has on him.
I would however; suggest focusing on his pain issues first and setting in place the appropriate team for his care. Gavin and Clare are most knowledgeable in this area.
MarionApril 3, 2013 at 7:06 pm #60641
Sorry I also meant to say we don’t have the services of a Macmillan nurse yet. Dad has a district nurse that visits every few days but really only address his bed sore that he is still recovering from after his extended stay in hospital.
Actually as a family we don’t feel the overall care is particularly “joined up” right now. The Royal Marsden were great but since he left and he is in the hands of the palliative care team it is hard to know who is actually in charge of everything. We are trying to sort this out at the present time.
JoelApril 3, 2013 at 7:02 pm #60640
Sorry it’s been a while but life has been slightly all over the place of late. Thank you for all of your messages, and the link to the AMMF website – it’s all much appreciated.
Dad is now at home and still fighting but is now beginning to complain of pain rather than just discomfort in his abdomen. He is also beginning to not want to get out of bed some days (and perhaps sleep a little more). He is still doing his best to eat and drink, some days are better than others as you would expect.
Dad has also become more distant and is very quiet, sitting watching tv most of the time. When we visit (with his granddaughters 8 and 14) he usually manages to perk up for a few minutes but then resorts back to being quiet and almost on his own. As you can imagine this is unbelievably hard to experience for everyone concerned as we are desperate to make the most of our time with him.
It is so out of character for Dad who was always so full of life and conversation. I often wonder if this is down to the cc or if this is Dad’s way of dealing with the situation. I know everyone is different but have others witnessed a similar progression?
Thanks again for the support offered by the forum,
JoelFebruary 13, 2013 at 2:06 pm #60635gavinModerator
Welcome to the site. So sorry that you had to find us all and I am sorry to hear what your dad has been through. He has been through a lot hasn’t he. But I am glad that you have joined us all here as I know that you will get tons of support and help from all of us here. So please keep coming back and keep us updated on how your dad gets on.
I too am from the UK here in Dundee. My dad was diagnosed with inoperable CC back in 2008 and treated here at Ninewells with PDT. He never had chemo and also had a metal stent inserted to deal with the blockage and jaundice. As Marion has said to you, diagnosing CC can be very complex and my dads CC took over 3 weeks to completely diagnose. And also unfortunately, infections can be quite common and I am very happy to hear that your dad has recovered from them.
The link that Marion gave you to AMMF’s website is one that you should definitely follow as I know that you will get a load of info all relating to the UK from it. And I am sure that Helen and others from the South and London will be along soon as well with their opinions about hospitals in your area etc. But, I would say to you that if your dad is being treated by specialists in CC at The Marsden then I would say that your dad is in very good hands indeed. Of course a second opinion re possible surgery is an option and one that you could also look into as well.
I know what you mean about your dad and how he reacted to hearing that his CC was inoperable, my dad went through that as well. Does your dad have the services of a Macmillan nurse? My dad was offered one after his diagnosis and she was a great help to us all during my dads fight with CC.
Please know that you are not alone in this, we are here for you. Keep coming back and ask as many questions as you have and we will do our best to help in answering them. We know what you are going through right now and we care.
My best wishes to you and your dad,
GavinFebruary 13, 2013 at 10:05 am #60637claremSpectator
I’m in the UK and still very new to this but learning fast thanks to everyone here. It’s awful that you’ve had to find this site but there is so much support that I am glad you stumbled upon it.
My 41 year old sister was very unexpectedly diagnosed in October 2012. She’s had internal stenting, an external drain and portal vein embolisation in November to grow her liver for a resection. The resection went ahead in December but was halted a few hours in as the tumour was to extensive to remove. The plan then was for Chemotherapy but since December 27th infection has been the biggest complication and it’s delaying chemo. My sister was admitted with Septic Shock in January, has an abscess on her liver that they are still trying to treat and an external drain from the abscess. She’s home now on oral antibiotics and it’s one day at a time at the moment.
It can seem like 1 step forward 2 back and I can completely relate to the devastation of being told the resection is now not possible. Nothing has gone to plan for my sister. If you have any doubts please ask for a second opinion. A good team of doctors will understand why you are asking for one. Once chemotherapy goes ahead, would surgery possibly become an option again? Marion has mentioned the AMMF site which is very good and has resources of UK experts on this cancer. The Marsden may already be one but if not then there are other doctors and centres available.
Tap in to all the support and advice here – I am amazed and indebted at the support I have received from strangers (although they don’t feel like that any more).February 13, 2013 at 3:06 am #60639marionsModerator
Joel….welcome to our site. I am sure that our UK members will come forward and welcome you as well. Joel, what you are describing is not unusual for this disease, as it can be complex to diagnose, to treat, and adapt to and it likes to throw curveballs i.e. infections, etc. But now that your Dad has overcome some major obstacles already the bile drainage via the stent will help your Dad feel better.
I also wanted to mention that there is a great organization in the UK which, like us, focuses specifically on Cholangiocarcinoma only. Helen designed an informative website:
and is very active on facebook:
I am glad that you have found us and please, continue to share with us, ask for opinions (we have plenty to offer) and continue to interact with our great members on this site.
MarionFebruary 13, 2013 at 1:18 am #60636pamelaSpectator
I am not from the UK, but I would still like to welcome you to this site. I am sorry to hear your Dad has CC. I am happy to hear your Dad has gotten better since having the infections, but I am really sorry that he is no longer operable. I’m sure it was so difficult to hear that. I would go with what the doctors say to do as they know best. Make sure they are very knowledgeable of this cancer and ask lots of questions. If you are then not happy with your Dad’s care, seek another opinion if this is allowed. I hope your Dad continues to improve. Please try to keep your spirits high and never give up hope.
All the best,
-PamFebruary 13, 2013 at 12:45 am #60638lainySpectator
Dear Joelh77, welcome to our extraordinary family but sorry you had to join us. Wow, your Dad has already run the gamut but I am glad the infection is finally cleared up so he can use his energies on fighting the CC. We all agree that upon first hearing the Diagnosis of CC one feels as though they have been hit in the stomach with a baseball bat. I promise you though that once a treatment plan is in place the fright turns to fight and you are almost there. Please keep in mind that it is your perogative to ask for more opinions. I am not familiar with how they work it in the UK but it just seems to me that if he was operable not that long a go that perhaps surgery would not be out of the question down the road. Again this is where that 2nd and 3rd opinion is of utmost importance. We do have a good amount of members in the UK and I just know you will begin to hear from them. Hang in, be strong and take each day as it comes! Looking forward to better updates to follow.February 12, 2013 at 11:45 pm #6772
This is my first post to the board having stumbled across this unique resource through Google.
Back in November my 65 year old Dad was diagnosed has having a Klatskin tumour. He had been admitted to a hospital abroad having presented with jaundice. At the time the hospital put in place a plan to drain the bile from his system and then to remove the tumour surgically. At the time it was important to my Dad to get back home to the UK in order to have treatment here.
We had him transferred back at the beginning of December and after getting him into the system here he was admitted to the care of the Royal Marsden in London. The plan was similar, he was to start the draining process and then move on to surgery however the path has not been so straightforward. Initially the drainage did not happen too fast but after a few days it started to move along (I forget exactly the units for these numbers but he started around 500 and they were trying to get them to below 50). At this point they did surgery to embolize one side of the liver in preparation for resection.
Shortly after Christmas he suffered an infection and was admitted to the Critical Care Unit for a few days suffering from dehydration and a severe fever. A course of antibiotics worked and a few days later he was transferred to a ward and then to home. At this point the drain was still doing it’s thing and he was due to go back for a CT scan and follow up at the beginning of February.
After a week at home his condition deteriorated and he was taken back into hospital and admitted back to CCU. This time the infection was worse and by this point the concern was not directly the tumour but on controlling the infection and protecting his heart. He ended up having surgery again and this time they put a second drain in to unblock the other side.
Since recovering from this second bout of infection we have now been told that the tumour is now inoperable. As you can imagine mentally this has been a huge blow. The whole process has been an emotional rollercoaster for my father and the entire family – it seems like every step of the process is fighting against him.
Currently the planned next steps are to insert stents for internal drainage (now the infection is under control) and then to explore chemotherapy options.
This is what the hospital is currently proposing but I would be keen to hear what other people think and particularly any experiences in the UK?
Thanks in advance.
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