Intrahaptic bile duct cancer..... weight loss

Hi Samaranda, really sorry you have this cancer. My partner was dagnosed in October 2021, and it's not operable. I'm not a medical person so can't say anything about weight loss. But with this particular cancer, everyone's experience seems to be different so it might be tricky to say anyway. My partner lost weight initially, but mainly because he was hospitalised with jaundice and infections - since then his weight's been stable although he's encouraged to have a high-protein diet.  He has been tired all along, and unfortunately the chemotherapy/radiotherapy is making that worse.

When you talk with the oncologist, ask whether there are any trials you'd be eligible for. This is a rare cancer and there's quite a lot of work. underway to improve treatment.

Very best wishes with this journey.

1. Hi Samaranda, I'm so sorry you're going through this. My husband was diagnosed with bike duct cancer over Christmas.  He had a liver resection, gall bladder removed and bile duct reattached to his intestine.  He's now struggling with chemotherapy.  He's lost loafs of weight and is constantly tired.  I hope you're doing well and having some good days.  Blessings Annabel

I was diagnosed in 2020. Had liver resection and adjuvant chemo. Then it came back on the site of the operation. Told I had no more than a year but I’m still here! The only problems I have ever had have been from the chemo - hospital twice. Never had any symptoms, diagnosed by a chance finding. No pain except as you say normal in your 60s. I asked the oncologist and he said it was because the liver is such a large organ and has relatively few nerve endings up in it it can withstand a lot of disease before a person realises. That is why this type of cancer is such a killer as diagnosis is often very late. I weigh the same now as the day I had my resection in Feb 2021 but I have never lost my appetite although a lot of people do. 

Hiya Samaranda,

So I've just been diagnosed with Bile Duct Cancer but I too  have Wilsons Disease.  I have Hepatic Wilsons but developed Neuro symptoms in 2018.  You sound very similar to me.  I start Chemo on the 19th this month but hope to have a holiday in August.

For support for Wilsons Disease please look at The Wilsons  Disease Support Group UK - On Facebook they are a friendly bunch. They can also help with Wilsons Treatment and diet.

Also it sounds like you have a very late diagnosis of WD (Wilsons)

Weight loss and Liver disease goes hand in hand but only when your liver stops functioning.  I have Compensated cirrhosis (diag 2006) which means yes Im cirrhotic but you wouldnt know to look at me. My bloods are normal too, so its my Liver scans that show cirrhosis. I was healthy working (46) I got tierd yes but at the end of the day.  Some weekends I did nothing.  But reasonably fit.   Except for occasional abdominal pain.  I had my gallbladder out when I was 17.  No cancer I was diagnosed with WD at the age of 15 so been on colation drugs since then.   

So I would say you are not losing weight because your liver is still coping/working well.  Which is a good thing.

Hoping you are well,

Wendy