Newly diagnosed with Cholangiocarcinoma

kayjay that’s so awful to hear. It just goes to show how common it is unfortunately. I’m so glad you are on the mend now and I genuinely wish you well with your treatment. Thank you so much for your words of kindness. We are very lucky to have him home and he is surrounded by everyone who loves him. I’ll find solace in all of the time we had to make new memories and record them . Take care of yourself and keep us posted on your journey x

I was just reading your reply to this thread and was taken aback because you are the first person I have come across with a medical history which is almost identical to my husband!  His liver transplant was 13 years ago at which point his first cancer was found in his old liver, he has been clear of any recurrence until October 2019 when he was diagnosed with a cholangiocarcinoma, he had two cycles of chemotherapy before the pandemic struck.  Because he had severe negative reaction to his chemo the oncology consultant passed his care back to the liver clinic team which have been monitoring him ever since.  He had the bile duct stent done in the early days and that was replaced again 6 months ago.  He is now awaiting results of a recent MRIS.  I try to keep him positive but it isn’t easy.

Hi Kayjay, been thinking about your journey and sending you lots of positive vibes. Hope you’re doing ok x

It might be worth getting a second opinion from one of the Cholangiocarcinoma Specialist Centres if you haven’t already done so. Even if chemo isn’t an option, there might be other treatments that are suitable.

There is a list of centres on the AMMF website. It is a charity that helps with Cholangiocarcinoma patients.

https://ammf.org.uk/specialist-treatment-centres/

Apologies if you’ve already been down this path.

Andyxxx, thank you for your reply, it is difficult because my husband refuses to talk about treatment options, I think he feels helpless but without communication it is difficult to help him.  He has a phone appointment with his liver consultant on the 19th and I hope we will have some results from the scan and blood tests at that point.  He is 74 and I think that mentally he has given up ... not easy watching him go down this route ... 

I am very sorry to hear that. Six months after my Whipple surgery, the cancer had spread to 6 different parts of my torso. My oncologist said I had 2-4 months left, that I should book into a hospice and prepare for the end. 
I managed to get onto a drug trial at UCLH and two years later I still have one tumour left, but live a pretty normal life. I haven’t had any treatment for a year.

I appreciate that we are all different and have very different responses to treatment, but the one thing that has kept me going is hope.

I wish all the very best to you and your husband and I really hope there is some good news in the MRI results.

Hi Lils, thank you for thinking about me. I'm actually doing quite well at the moment, in terms of how I feel, coping ok with the chemo, "pacing" myself to live with the fatigue, and luckily not suffering from the nausea so many chemo patients experience. 

But of course I've no idea how the cancer itself is progressing, until I have a further CT scan in three weeks time (ie after the third cycle of chemo) when I'll see my consultant for the results, and hopefully get a better picture of what the next few months may bring.

I wonder how things are for your family?

With best wishes

K xx

It’s good to hear you are handling the chemo as best as you can. If you feel a sore throat coming on or any sores in the mouth, get yourself a humidifier, they are a godsend. Lemon sweets for any metalic tastes also help. Any tips I can help with please let me know x  fingers crossed the scan goes your way and some progress is made. 

Dad sadly passed away 16th March. We got to care for him at home right until the end. Mam is lost after 56 years together but we’re looking after her now xx

I'm so very sorry to hear that your dad has died. I hope he was able to leave this life peacefully at home and with his wife and family at his side. My sympathy to your mother, the loss to her after so many years of marriage must be immense.

K xx

Thanks so much KayJay1. It was actually really peaceful and he waited for the whole family to be there.

I'll have everything crossed for your results ! hopefully the weather picks up and you can get some days out enjoying the sun and have some well deserved you time xx

How are you coping with your Husband? Must be so hard for you both to be going through so much at the same time. You are both in my thoughts x