bile duct cancer

Hi and a very warm welcome to the online community

I'm very sorry to hear that you have bile duct cancer. I had a different type of cancer so didn't have either a whipple procedure or chemotherapy but I noticed that your post hadn't had any replies.

If you type 'whipple' into the search bar in this group you will find a couple of recent posts which mention this procedure so you could have a read and respond to any of the posters who you think might be able to help you further.

If you have any specific questions you could post in ask a nurse and one of the specialist cancer nurses will reply within 2 working days.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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thank you i dont find this site easy to navigate as i am not at all computer savvy i will try to search the way you said thank you

Yes it can be a bit tricky at first . Let me know if you need any help.

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Hi Melizza I have bile duct cancer too but haven't had any surgery. Hope you are doing ok. 

Hi Cankerline and Melizza I've just joined the club.  Had biopsy result back this afternoon and it's also inoperable.  I'm being referred for Chemotherapy so hope we can chat and support each other.

Is the whipple procedure to do with keeping the bile duct open?

Cankerline are you having any treatment?

Hi Mireya, sorry to hear about your diagnosis. I was given chemotherapy but it didn't work for me so there is no treatment available for me but my Oncologist and GP help me with my symptoms. I am also under the care of the Palliative Care Team although I haven't needed to see them yet. I would very much like to stay in touch so that we can support each other. Very best wishes and hoping chemotherapy works for you, Cankerline

Cankerline that's rough news but there is a second line drug when chemotherapy fails that isn't licensed for use here but under trial that I read about I'll find the link for you.  

Here you go https://ammf.org.uk/proof/ I don't understand a lot of the big words but your oncologist would.  It might be the trial is suspended at the moment due to covid but it's still open for participants.  Worth considering.

Also I don't know if you've seen this website but there's a lot of good info for patients.  

Today I'm feeling calmer and managing to process all the news from yesterday, it's a lot to take in isn't it.  I'm a natural optimist and try and find something positive from everyday and make a note in my journal.  It's been harder lately but I'm determined to keep doing it even on dark days.  Lovely to look back on over time.

How are you?

Hi Mireya, thanks for the information about the trial. I agree that it is very hard taking in the information about our diagnosis. I find the free on line calendars from Action for Happiness help me. I print them out and have them on my kitchen cupboard where I can see them. I am feeling fine at the moment apart from occasional abdominal pain. I am on Colestyramine to prevent itching which i find works really well. I have a husband and 2 grown up daughters and we are making sure that we have lots of happy times like going to the seaside. Your journal sounds like a good idea.   Hope you are able to have lots of happy times. 

Thanks for the calendar I've added it to my Pinterest Board and shall try and follow it. 

Glad you're feeling ok and itch meds work.  Thats one I dread, I enjoy a good scratch but really not looking forward to this effect.  I'm lucky in that I've no obstruction so far and all I have is pressure in abdomen and slight burning in shoulder.  Husband is struggling to feel anything except extreme anxiety at the moment but I've told him we've got to create lots of happy memories as well as prepare for his time alone.  He struggles talking about feelings and even more looking at ways to deal with it.  We'll get there. Talk again x

My husband sounds like your husband. He is also very anxious. He has been working from home which has been nice for me as I am on sick leave.I am hoping he will join one of the Macmillan on-line support groups as i am finding it very helpful. Do you know when your chemo will start? Take care. x