New here

Hi MariaLyn and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you've recently been diagnosed with bile duct cancer and I know what a difficult time waiting for tests and a treatment plan can be.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I'm sure the other members of the forum will be happy to answer questions and share experiences with you.

Wishing you all the best 

Thank I am not sure how these forums work as never used them before.

If you want to ask any questions or ask about other people's experiences the best thing to do is to start a new post in the same way as you did this one.

x

Hi MariaLyn I was diagnosed last December having been treated for secondary bowel cancer. I didn’t have any symptoms, nor any pain! I hope you have a treatment plan in place soon. I’ll keep an eye out for you. If I can help please reach out. By just replying to my post, I’ll get an email, which I will then respond to. Sending you love and hugs.

Hi Jools63

Thanks for your message, sorry to hear about your diagnoses, do you have a treatment plan all set up and if so does it help? I am having another scan next week and they will decide from this whether to start Chemo and Immunotherapy treatments. Take care of yourself hopefully speak soon.  

I did have a treatment plan, but changed my mind. I wA offered two types of chemo and immunotherapy together. You can find out about them on here. The chemo was Gemcitabine and Cisplatin, and the immunotherapy was Durvalumab. These may be what you’ll be offered. My reason for not going ahead was that it would mean spending a whole day at the hospital during week one and two. On week three I would then see the oncology specialist. This was going to be for almost six months, and wasn’t guaranteed to work. If it did work, I was told I’d likely live an extra six-twelve months. Not a good enough gamble for me. I’ll keep my fingers crossed that you will soon know what you will be offered.

Hello. My mum has terminal bile duct cancer. She's currently getting chemo and immunotherapy.  They can't seem to get sickness under control although she has it before chemo. We are thinking it's food. Can anyone recommend if they have had sickness what caused it or what they can eat? Thanks. Zx

Hi I can’t recommend what to eat, but the nurse told me that cisplatin chemotherapy is known to cause nausea. If that one she’s on you’ll need to speak to the chemo nurses about sickness. They have different anti sickness medications they can use to get it under control.

Hi I have terminal bile duct cancer too.  I had terrible nausea before I started o cisplatin and gemcitabine. The chemo actually helped with the symptoms.  Also the anti sickness tablet take 3 times a day.  Eat a little often something light.  Keep well hydrated.  I know it’s not easy when you’re feeling sick all the time. 

Hope she gets some respite soon 

x

I hope you don’t mind me asking, but why have you been given a terminal diagnosis if you’re in treatment? I’m finding it really difficult to get my head around my own diagnosis. Surely if we’re still treatable we’re incurable, not yet terminal? I hope you’re doing okay.