Cholangiocarcinoma Cancer

Hi Kristy

Thank you for your reply. I told my Mum what you had written and along with the fact that it is just a lot closer she has decided that she will the chemo at Singleton.
We are off there tomorrow (monday) to meet Dr Askall for the first time and to get everything set up so that she can start her chemo as soon as we get back from holidaying in France.
This is providing that the surgeon in France that we saw last week does not decide to operate. We are waiting on tenterhooks for that news but hopefully it won’t be too long.
I hope very much that your partner is still feeling well with the chemo. I expect that you don’t have much time to get on here but I just wanted to let you know that I have been thinking about you.
thoughts and best wishes

Jemima

Hi Kristy,

Was thinking about you today. I don’t blame you for moaning, a simple blood test should have been given so you know if blood levels are ok for chemo. It’s the little things like this that sometimes push me over the edge and make me want to scream.

Did the oncologist mention your partner taking a low dose antibiotics whilst on Chemo?. My Dad was advised by his Doctor to, it helps keep infections at bay in the stent whilst on Chemo.

Good luck for tomorrow

Best wishes

Hi Kirsty

I have only just seen your post. Not sure how I missed it. I am just down the road from you in Pembrokeshire. My Mum was diagnosed in Feb 2010 with CC and has a klatskin tumour which is in the left bile duct just inside the liver but it has now spread a little to the right duct. The first place we went to for surgery advice (Basingstoke) said that it was inoperable, but we are getting a second opinion from Prof Brian Davidson at the Royal Free in London, and a third opinion from Prof Jacques Belghiti in Paris (my mum is French but lives here).
If they don’t come up with anything then she is due to start chemotherapy (gem/cis) at the beginning of August.
Who is it that your partner has seen ? Was it in Swansea ? For chemotherapy we have seen Dr Crosby at the Velindre Cancer Centre in Cardiff but Mum may end up having the treatment at Singleton but I can’t remember the name of the doctor…Dr A??? Would this be who you have ?
It doesn’t seem like they are very switched on or sympathetic so it may sway our decision to stay in Cardiff even though it is further away.
In everything that I have learnt so far the best thing to do is get as much information as possible and then if you are not happy with the care that you are getting then try somewhere else.
Sending my best wishes to you and your partner
Jemima

Hi Kirsty,

Welcome to the site, although I am sorry that you had to find us all. And I am sorry to hear what you and your partner have been through. That sure is quite a tough time that you both have been through.

My dad was diagnosed back in the summer of 2008 and his first symptom was the yellowing of the eyes caused by the jaundice. Finally when he was admitted to hospital, Ninewells in Dundee, they did the usually battery of tests which lasted about 3 weeks or so. First they thought it was gall bladder related, then this, then that etc before finally he was diagnosed with inoperable CC. My dad had a metal stent inserted to help relieve the jaundice and then he had Photodynamic therapy to try and slow down the progression of the tumour. He couldn’t have surgery due to the location of the tunour, too close to the portal artery and he also couldn’t have radiation. He hoped to try chemo at a later date, but unfortunately he couldn’t do that either.

As to a second opinion for your partner, I would say to definitely do this and the names of doctors that Andie has given you are a great starting point, as they are well known and experienced in dealing with CC. I have to say, that in my opinion what your partner was told by that doctor that he and only one other doctor in the UK have dealt with CC is complete nonsense. I do hope that you manage to arrange a second opnion asap for your partner.

I know how you feel when you say you are banging your head against a brick wall, I felt the same when my dad was diagnosed and trying to get my head around all of this. But you are doing the right thing in coming here and looking for help, so please keep coming back here and we will all help you as best we can. My dad was diagnosed and treated at Ninewells Hospital in Dundee and his specialist was Mr Iain Tait. Feel free to ask any and all questions that you will have and I am certain that someone here will be able to help.

Good luck with everything and my best wishes to you and your partner,

Gavin

Hi,

My Dad will be having Gemcitabine and Cisplatin. Day 1 he will have both, Day 8 he will just have Cisplatin then he has 13 days off. They are hoping to give him 3 cycles then scan to see if it has worked. This was the treatment that came about from the ABC02 trial and has proved to be succesful in advanced cases compared to just Gemcitabine alone.

My Dads CC isn’t in the liver it’s contained in the bile duct outside the liver.

Good luck to you and your husband with the Chemo.

Hi,

Our local hospital that my Dad was sent to when he was admitted for jaundice told him there was no treatment available and more or less to go home and live what few weeks he had left.

The local Liver hospital, The QE Birmingham, looked at Dads scans and though deemed it inoperable due to it’s location (though very small it is round important veins and arteries, surgery would be too risky) had agreed to start Dad on Chemo. They were able at the time to get a stent into Dads bile duct, something that our local hospital had trouble doing. This got rid of Dads Jaundice and up until last week that kept it at bay. Typical of this rollercoaster ride the stent has decided to block just as chemo was about to start aarrgghh!! We are now awaiting an emergency appointment for a bed to become available so Dad can have his stent unblocked.

Dad wasn’t keen on second opinions for surgery as over the last few years he has had a few, and I think the fact that the operation due to tumour location could be more life threatening than the cancer itself put him off. He had colon cancer in 2000 and this resulted in 3 operations and most of his colon removed. He recovered well from this and was cancer free for 9 years until this little beast decided to pop up. I think because he feels so well he doesn’t want to undergo another operation that has more chance of not working, which I can understand. He was happy with the Chemo choice as originally he was told no treatment was available.

We have looked into Cyberknife but have been told Dad must have a response to chemo first. I’m hoping that because it’s slow growing and at the moment very small that the Chemo will help keep it under control. We were told if it had grown anywhere else it would have gone undetected, luckily it chose to grow just so that the bile duct became blocked and the jaundice issued the warning signs.

My Dads is extrahepatic, have they said where your husbands is as this can make a difference to surgery/treatment options.

I will be keeping everything crossed for you that you get some answers, and I’m sure more members will be offering you some more advice soon.

Keep positive