What should we expect?

Hi Alison,

I haven’t visited for a while but found this a really friendly, helpful and comforting website in the early days when our lives were thrown into turmoil – an emotional rollercoaster – scared of the future – probably just what you are going through now. My heart goes out to you because it was a horrible time.

My mum was diagnosed April 2009 and v. poorly with all the symptoms you mention for your dad plus jaundice which didn’t seem to want to go away (she said that was the worst thing and v. tiring). After 7 weeks in hospital, which left her malnourished and v. v. weak – after 3 plastic stents and finally a metal one later in the summer of 09, she ‘came home to die’, deflated and hugely angry that “this was going to be it”. (NB: We wished we’d insisted on a metal stent in the first place because they kept messing her about by replacing plastic ones – but I strongly suspect it was a money issue as these are expensive and tricky to fit!) My mum decided she didn’t want chemo, radiation and she wasn’t offered surgery because it is ‘incurable’.

Since that time (it seems ages ago now) my mum has fought back and has gone on and defied all the oncologists and surgeons prognoses of 6-9 months – this is almost 2 years on and she’s still here and chirpy (although quite weak these days but tries to keep up with what she used to do so easily and take for granted). She actually got stronger after leaving hospital so weak, for a period of time enjoying a good quality of life, going out and about again, enjoying food (but not as much as she used to) and put on weight! She takes ensure drinks every day which build up her strength and supplement her diet, so it doesn’t matter if she doesn’t eat regular meals, and drinks plenty of water. She still gets infections of the stent from time to time and which is controlled with antibiotics (specifically for the stent/bile duct area) and even got scepticemia (with tremors/shakes) which managed to be treated with different IV then, oral antibiotics. Now she keeps antibiotics at home to take at first early signs: severe pain, nausea and vomiting (bile), temperature, tremors or a mixture of these, and they try to take blood cultures too to check for liver function and blood infection to make sure she’s taking the right one. She has anti-sickness pills and manages on paracetomol for pain mostly, but when she has had severe pain has taken tramodol (an opiate which helps her to feel no pain and actually raises endorphines so made her feel more positive). She managed v. comfortably taking a low dose of tramadol for over a year, but was falsely told by a local doctor to double the dose when she was clearly just suffering pain from an infection which could have been resolved by taking antibiotics! The higher dose made her sleepy and messed with her mind, so she took the decision to stop altogether (although did go through a kind of ‘cold turkey’ because she didn’t wean off slowly, and now won’t take them at all.)

So my advice is to get a good hospice, cancer or macmillan nurse to keep an eye on your dad at home, keep faith, have hope that your dad will outlive his prognosis, but gently prepare too for his end of life with all his wishes which will give him back some of the control he may feel he’s lost with this diagnosis. Above all, enjoy every minute of his and your time together won’t you, say all the things you want to say so you have no regrets, and keep setting the milestones to keep him strong and to keep going and positive. I have given you all the downsides in this note – but there have been many, many upsides too which so much fun and laughter and joy – more than we ever appreciated before her diagnosis. We love her dearly.

I’m certain all these things will come naturally too you, just like it did for us – and I have learnt that time is too short to waste it worrying and crying and feeling down.

These are the things that have really helped us all, as no matter what my mum’s fate now, we feel more prepared than we were in the beginning of her diagnosis and are so glad and grateful for the extra time we never imagined we’d get.

I really really hope (as I do for everyone here) that you have many more happy memories together and your dad defies the medics too.

And I hope and pray one day a cure can be found for this cancer so we don’t have to watch our loved ones suffer anymore.

Take care.

Wendy

Dear Alison –

So sorry about your dad. CC is different for each person. Often patients experience weakness, nausea, eventually pain. Hold him close and tell him how much you love him. Make the most of every good day. Take care of yourself so you can take care of him. My husband lived 6 months after diagnosis and we had some great opportunities to make wonderful memories and we don’t regret one single thing. We went to the beach, we went to Puerta Vallarta with our kids, we held each other and cried, but we loved each other and when he went into the arms of God, it was directly from my arms. It is hard to make the most of each day when there is weakness, pain and overall yuckiness, but you will be glad you did and dad will enjoy whatever time he has. blessings, Susan

Dear Alison – So sad to hear about your Dad. I am sorry that this illness had to bring you to this web site, but there is so much information that you can find here and so many people who will be willing to help you with guidance. The fevers are not unusual if he is dealing with infection due to his stents. The prognosis for cholangiocarcinoma is not set in stone. If you go back and read through so many posts on this site, there are those who were given 3-6 months and are still with us years later. As everyone always says on this Board, no one has an expiration date stamped on the bottom of their feet. Doctors cannot realistically give a good prognosis for this disease. Also, it is always recommended that you get at least 2-3 opinions from different doctors. Where is your Dad being treated?

I would recommend you spend as much time on this Board searching through all the posts and getting as much information as possible. As you will see, this disease affects everyone differently; treatment options vary; and what is right for one may not be right to another. As for chemo, some folks have had great results and others have not.

I’m sorry that I don’t seem to be answering your questions directly, but there are no straight clear-cut answers because each case is so different. My strongest advice: try and find a doctor who has dealt with cholangiocarcinoma, since it is such a rare disease. Many doctors have never seen it before.

Please feel free to ask any questions and check in with us often. My heart aches for you and your family … this is a very difficult time for you all. Hugs from all of us – Nancy