(46 replies, posted in Clinical Trials)

Brilliant news for you Melinda, love it! Doing my Highland Fling YAY dance for you here tonight!!

So hoping that this treatment and trial can and will be rolled as quickly as possible to the so many other people that you talk about as well. Fingers crossed.



Increasing Clinical Trials in Cholangiocarcinoma - Dr. Zhu, Dr. Borad, Dr. Collison

From the Cholangiocarcinoma Foundation's 2015 Annual Conference.


Clinical Trials in Cholangiocarcinoma:ABC Experience - Dr. John Bridgewater

From the Cholangiocarcinoma Foundation's 2015 Annual Conference.


IDH1 Mutation in Cholangiocarcinoma - Kate Yen.

From the Cholangiocarcinoma Foundation's 2015 Annual Conference.


This is excellent news Marion, thanks for this. Link on the FB page now as well.

Thanks for that Marion. Tons of great and relevant info in all these links that you posted. Maybe this thread can be pinned to the top of this section so that folk see it more and I know i will be putting this thread into some of my replies to newcomers now as I know it will help them.

Thanks again!



(0 replies, posted in Members' Cafe)


"They carried portraits of Mr Nemtsov and banners saying "I am not afraid."


(8 replies, posted in Members' Cafe)

Thanks everyone. Needed to have a rant and as well know, having a rant and getting things off your chest every now and again does us all good doesn't it!!

Sorry to hear about your SIL Julie. My mum smoked for about 50 years before stopping in 08. She had her first heart attack then and stopped there and then, she's had 3 now. She smoked for a few years after getting her diagnosis of copd and the best thing that someone with copd can do for their health is stop smoking. It is never too late to stop! My mums docs told her that if she hadn't stopped when she did she would not have lasted a few more years after her first heart attack.

I assume that your SIL knows about the dangers of smoking and the oxygen machine? When my mum got hers installed the team spelt out all the dangers of smoking, flames etc and oxygen. My mum does not smoke now, but the team said that they can tell when someone is lying to them as they come to service the machine every 3 months or so and no matter how much you clean the filter it shows if someone is smoking in the house!! I clean it every week and even without someone in the house smoking the amount of dust etc it captures is huge!!

Thanks all!

Much love and hugs to you all,



(8 replies, posted in Members' Cafe)

Nice one Kris!!!

Hi Donnie,

Great to hear from you! I'm okay thanks. Glad to hear that you are enjoying some quality of life at the moment and this is to be cherished isn't it. I am sure that as the bili numbers keep on dropping  then the itching will also cease as the jaundice clears up. This took some time as well for that to happen but it did happen and hopefully it will for you as welll.

Hope that you get some good news at the Beatson on Weds and please let us know how that goes and what they say. How do you like going to the Marie Curie hospice classes? My dad used to go to the Macmillan ones here in Dundee and he was sceptical at first. But he loved it and started going twice a week. He thought it would be full of patients all feeling really down about everything but it was the total opposite. Lots of laughs, jokes and they all enjoyed it loads. Hope that you will get a lot out of it too. The physio and relaxation classes should give you a lot. My dad loved them too and he used to get a reikki massage every time he went. Do they do reikki there? If so you should give it a try!

Great to hear from you Donnie and looking forward to hearing from you again soon.

My best wishes to you,


Glad to be of help Fred.

My best to you and your son,


Happy anniversary Julie!!!  This is great news indeed and yes, it should be celebrated! Sounds like your meal was a good one as it should be! Hope the news on Friday is just as good and as Duke says, we love you too!!




(8 replies, posted in Members' Cafe)

Just to add to the above post, sorry. Based on my mums experience with COPD and how her life is and has been for the last years, she is alive yes but she doesn't live a life like we all would expect. It's more an existence than a life.

Smoking will do this do you!!!!

Think I should sign off for tonight.

Hugs to you all and apologies once again to everyone.


Thanks for that Marion.


(8 replies, posted in Members' Cafe)

R.I.P Mr Spock. And for those out there who may not know, he died of COPD. Something I unfortunately know far, far too much about  having been my mums carer for the last 9 years who was diagnosed with COPD a decade ago.

COPD  is no joke. Not only is it a huge killer, it is a horrible, horrible progressive disease that robs the patient of pretty much any half decent standard of living. Spending each day housebound with only the TV to stare at is no way to live. Oxygen for 16 hours of each day every day, no fun either. Having to take your medication through a nebuliser 8 times a day every day and still fighting all day to get the phlegm up, zero fun I can assure you all. Retching like a dying animal is the best way I can describe what it is like for someone with COPD trying to clear their lungs, and that happens multiple times a day every day for someone with late stage COPD.

I won't even go into all of the other factors and side effects that copd patients go through or I would be here all night!

COPD is BRUTAL and not only does it ruin the life of the patient, it also makes the patient totally reliable on the help of others to live their life with even the tiniest bit of dignity. It will affect the patient and all of their loved ones throughout the progression of the disease.

My dad was diagnosed with CC at a very late stage and it was deemed inoperable from diagnosis. But, even with all that he went through with CC he was still able to enjoy many things in life and even learned how to ride a horse, something that he always wanted to do and I have a ton of pics on my FB page of my  dad on Paddy at the riding center during the last months of his life.

Late stage COPD will NOT allow someone to live the last years or months of their life like this, no chance. It will take everything.

My apologies if I am being depressing or anything like that here and my apologies to you Duke if you feel that I have hijacked your thread with my ramblings on all of this tonight. But having spent the last 9 years of my life caring for my mum with COPD and my dad as well with his CC for 18 months too I wanted to let people who may not understand  about COPD what it is like for the patient and their carers. I'm sure that Leonard Nimoy would like me to get that message across to others.

http://www.cbc.ca/news/community/leonar … -1.2976181

My apologies to all and RIP Leonard.



(12 replies, posted in Introductions!)

Hi Fred,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your son, but glad that you have joined in with us here as you are in the best place for support and help and I know you will get loads of each from all of us here.

Thanks for letting us know what your son has gone through so far and my fingers are crossed for the best possible news from the CT and MRI results. Please let us know what they show. There is not much that I can add to what the others have said to you and you will find tons of very helpful info in the links that have been given to you.

Please keep on coming back here, we are all here for you and we care.

My best wishes to you and your son,


Hope that these numbers start changing for you very soon Duke. And hope that you can get some good sleep as well as I know how much my dad suffered with the not sleeping at night too well.

Cooking in the middle of the night Momma, now that's planning ahead! Sweet/sour meatballs sound good, never had them before and I do love cabbage as well!


Hi Colleen,

Thanks for the update on your mum and what brilliant news this is!!! No new growths and shrinkage as well, love it! My fingers are crossed for the good news to continue on rolling for your mum and please keep us updated on everything if you can.

My best wishes to you and your mum,


FOLFIRI plus bevacizumab as a second-line therapy for metastatic intrahepatic cholangiocarcinoma.


Diagnostic performance of CT and MRI in distinguishing intraductal papillary neoplasm of the bile duct from cholangiocarcinoma with intraductal papillary growth.


A Phase II Trial of LDK378 in ROS1 and /or ALK Over-expressed Advanced Intrahepatic or Hilar Cholangiocarcinoma



(15 replies, posted in General Discussion)

Glad to hear that the diuretic is working Duke and hope that it does not muck about with your potassium levels. Pregnant look gone, good!!


Actually the link works for those not on Facebook as well, just checked it.

For those on Facbook -

https://www.facebook.com/permalink.php? … ry_index=0


Have you thought about SIRT? It is now available here in the UK. I heard from Helen again and she says that SIRT is availabe where there is evidence of clinical progression during or following standard chemotherapy. That could be worth looking into could it not?


Here is a link to Prof Juan Valle's page at the Christie in Manchester -

http://www.christie.nhs.uk/about-the-ch … valle.aspx

My best wishes to you,