A Novel Clinical Factor, D-Dimer Platelet Multiplication, May Predict Postoperative Recurrence and Prognosis for Patients with Cholangiocarcinoma.



(12 replies, posted in Introductions!)

Hi Jan,

Apologies for the delay in getting back to you on this. Was really busy yesterday during the day and could not really write too much.

Yes you are right that this is a nightmare rollercoaster and to be honest I would say there is no right way to handle everything. What works for one person may not for the other etc. I guess that for my dad we were told straight from the off that his CC was inoperable and that treatments offered would only be palliative no matter what he decided to go for. He had to think about what he wanted with the time he had left and he chose the PDT as he felt it would give him a better chance of quality of life for that remaining time so maybe that helped him a lot with his thoughts and actions following diagnosis.

My mum had a pretty serious health condition as well, COPD and still does and perhaps that helped her deal with the news of my dad having a terminal illness. I would say that my mum accepted the news quite quickly that there was no cure for my dads CC and I did as well. Again, I would say that it comes down to each individual person and how they go about dealing with this sort of stuff but I so know that it is not easy to do no matter what way anyone handles it. No one is right or wrong in this but that doesn't make it easier for you to deal with I know.

When my dad was diagnosed I needed to elarn everything that I could about CC and that is what led me here pretty quickly but again, I know that not everyone is like me in that aspect. My mum is certainly not like me and she didn't want to know too much details or anything about all of this but she knew and never hid away from the fact that my dads CC was inoperable from diagnosis.

Perhaps your mums doctors at the hospice could take your dad aside sometime soon and have a heart to heart with him about everything and what is happening with your mum? Also, here on the site we have Dr Giles who maybe would be of help to you in the best way for you to handle this with your dad? If so he can be reached through this link -

http://cholangiocarcinoma.org/for-patie … -dr-giles/

I know he has helped many of the members here with dealing with a lot of the emotional side of things. I know that this is so hard for you Jan but trust me when I say this as I have been there that you are doing a great job in dealing with all of this so please do now knock yourself down with anything. You know we are all here for you as well. I hope some of that is helpful to you. And please do not feel guilty about anything Jan, you have nothing to feel guilty about at all.




(20 replies, posted in General Discussion)

Thanks for that Daisy. The driver worked really well for my dad with his meds etc and he picked up quite a bit when he was on it as it meant that he was able to benefit from the meds rather than just bringing them up before they had a chance to work with his vomiting.

Please know that we are all here for you always and we so know what you are going through right now.



Thanks for that Tiah and great news indeed! Not sure about the other new spot  but hope that the surgeon can get to work on that asap. Please let us know how things go with everything.

My best to you and your mum,


Hi Julie,

Real sorry to hear this news from you tonight and wish I could say something that would help right now. Will keep you in my thoughts and so hoping that you can get on with a plan that you and your med team are all happy with, and of course you know I will be keeping everything crossed for you as well. Pickles for the cure, sounds good to me!

Big hugs for you,


Great news Brigette, thanks for sharing that with us all!! The blood clots can be treated and from what you have said it sounds like your med team are on the ball with this too.



Nothing new I guess but this study came out last week so thought I'd post this piece about it today. Saturday night as well..........

Alcohol is a direct cause of seven forms of cancer, finds study

https://www.theguardian.com/society/201 … ncer-study

http://www.cancerresearchuk.org/about-c … ses-cancer

Ha, social media. Yup, that has changed everything indeed and now nothing is hidden! Hope you had a great day and we all love you too!





Sensitive, contains stats.

Treatment Selection and Survival Outcomes With and Without Radiation for Unresectable, Localized Intrahepatic Cholangiocarcinoma.


Integrin β6 serves as an immunohistochemical marker for lymph node metastasis and promotes cell invasiveness in cholangiocarcinoma.


IgG4-associated sclerosing cholangitis masquerading as hilar cholangiocarcinoma.


Cholangiocarcinoma associated with limbic encephalitis and early cerebral abnormalities detected by 2-deoxy-2-[fluorine-18]fluoro-D-glucose integrated with computed tomography-positron emission tomography: a case report.


Well said Rick!

Have some more birthday wishes Marion, and another birthday hug too whilst I am here!


PS - Think you will need a few glasses of wine too to go with Rick's cake!


(6 replies, posted in Members' Cafe)

Happy Birthday Marion!! Have a great day!!

Birthday hug for you!!


Hemolytic uremic syndrome due to gemcitabine in a young woman with cholangiocarcinoma.


Laparoscopic choledochal cyst excision and Roux-en-Y hepaticojejunostomy.



(7 replies, posted in Members' Cafe)

Actually the belly shots I remember now as well for my mum. She got them when she was in the hospital with the clots and was followed up with the tablets when she got home.



(12 replies, posted in Introductions!)

Hi Jan,

Gotta rush right now, but will answer your question in more detail either tonight or over the weekend. Hope that's okay with you.



Thanks for that Marion.


(7 replies, posted in Members' Cafe)

Hi Newjersey,

My mum had blood clots a few years ago and she went on Warferin for them which worked a treat. She did not have CC so her clots were not CC related, she has COPD and has had multiple heart attacks but the Warferin worked for her. She was on it continuously for 6 months and got her blood checked every fortnight to check things and how it was working. Not sure if that is of any use to you or not but just thought I would chime in here. Not sure about the filter for future clots as my mum never had that. I think off the top of my head though that the Warferin did the trick quite quickly with the thinning and hope that this is the case for your dad as well.

Please let us know how things go.

My best to you and your dad,



(20 replies, posted in General Discussion)

Dear Daisy,

I too am sorry to hear about your mum, and like Teddy and your mum my dad also went through this as well in his final days. One suggestion I could make and I do not know if your mum has one or not is for a syringe driver for her meds. My dad had one when he was in hospice and that helped a lot with getting the meds into him as the nausea made it hard for him to keep them down. The driver provides a constant stream of the meds that your mum needs bypassing her need to swallow them.

Having gone through this with my dad, I so know what you are going through right now and how you feel. And I so hope that you and your mum can share that birthday together. My thoughts are with you and your mum right now.



Great news Patty, thanks loads for sharing that with us all.



Morbidity assessment of Opisthorchis viverrini infection in rural Laos: I. Parasitological, clinical, ultrasonographical and biochemical findings.

"In Lao PDR alone, two million people are supposed to be infected. Opisthorchiasis may cause severe liver disease, eventually leading to cholangiocarcinoma."

Utterly depressing to say the least.


Low expression of ARID1A correlates with poor prognosis in intrahepatic cholangiocarcinoma.