New diagnosis for my dad

Hi JWB 

I'm very sorry to read of your dad's diagnosis and all that you are going through as a family. I have had a different type of cancer so I hope you don't mind me replying. By responding to your post it will place it back at the top where it may be seen by more members of the bile duct cancer group and you may get more replies. I have linked the following 

This information is for bile duct cancer

 https://www.macmillan.org.uk/cancer-information-and-support/bile-duct-cancer

This information is for bile duct stent

https://www.macmillan.org.uk/cancer-information-and-support/diagnostic-tests/percutaneous-transhepatic-cholangiogram-ptc

This information is for bile duct chemotherapy 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/chemotherapy-for-bile-duct-cancer

Best regards to you all,

A x

Hi JWB,

There is a Bile Duct Cancer charity called AMMF which helps to fund research and raise awareness.

They have a website ammf.org.uk which has a lot of useful information and there is also an active Facebook forum where people post about their issues and the community shares their experiences and knowledge. The group is simply called “Cholangiocarcinoma Support (UK & Europe)”.

I’ve been a patient for more than 6 years and am stage 4. I’d be happy to help, if I’m able to, with any questions from a patient perspective.

Hi Andy I also have Stage 4 Bile Duct cancer. Owes diagnoses in 2020. Was on chemo for 15 months. 

Now on a new trial drug Tibsovo. Was interested to hear if you have been on any trials 

How have you felt during all those years 

Hi Ray of Sunshine!

Yes, I was on a trial for an immunotherapy drug. I was only on it for a few months as it impacted my kidneys. However, it did seem to do the trick for me but not for the others on the trial so it was scrapped at Phase 2.

The first year was awful, before and after surgery and the chemo took it out of me. The trial drug was much better as I didn’t feel poorly and regained my appetite. Since then, life has been good but my constitution isn’t great. I tire very easily, really suffer with the cold. I am very happy to be alive and make the most of each day.

Hi JWB, I could have written this exact same post myself, also just had this diagnosis for my dad today, total shock. He has been poorly for a couple of weeks with Jaundice out of the blue. and bile duct diagnosis today. Consultant says he should be viable for surgery as that's his only option. Would love to know your journey over the last couple of weeks, what to expect in the coming days.

Sending you strength and hope your dad is getting great care and getting the answers you need x

I’m so sorry to hear about your dad.

its a huge shock and takes time to process. I was similar with jaundice, but also had pale stools, reddish urine and an itchiness. I never saw a doctor but talked to one over the phone the doctor decided to do bloods. The liver results showed issues. I booked a private scan for the next day and was sent to hospital right away after scan. That was Saturday. By the Tuesday the consultant told me it was a tumou The shock and disbelief is overwhelming as it’s so much to take in. I was sick over poor consultant!
I was so lucky and had the Whipple surgery so i do hope your dad gets that as it is only cure.  It’s a tough fight but determination and positive thinking help. Plus this website is good for sharing worries and fears.Life becomes a new normal.  I’m 21 weeks post Whipple and currently on cycle 6 of chemo in tablet form. It’s been ok and five months post op I do feel really good. Tiredness is main thing but little and often in terms of activity helps. There are positive outcomes to this diagnosis so keep the hope. Xx