Advice on seeking additional treatment (e.g. Durvalumab) other than Gem/Cis chemo

We were told in July that NICE hadn't quite approved it yet but Clatterbridge were still able to access it from Astra Zeneca so fingers crossed it becomes available very soon.

I completely understand how you feel. As much as none of us want it to rule our lives, it's always there isn't it. We've arranged a surprise get together today for Mum with our family and close friends. It is our hope that she will be reminded of and feel the love around her.

Have you or your husband accessed any services in your local community? District Nurses have a specialist nursing team for cancer patients. This can be for physical issues or mental.

Also, I got my Mum signed up to the counselling with Bupa through Macmillan. I done it straight away as I knew it'd hit her hard one day and she now looks forward to her weekly call.

Take Care x

You defo sound very organised. I have tried with Macmillan but tbh they didn’t want to know! Which really cheesed me off as I have even been on a committee raising money for them. I will have another go, but apparently I have to through my (useless) gp’s surgery. Which is how I believe we also trigger the district nurse? Is that correct. 
Good tip re counselling, although as a reserved man, tbh honest I’m not sure he will want to go for it. 
Hope you family get together is a huge success. 
BW 

Ah that's a shame.  The counselling is actually with BUPA but you fill the paperwork out via Macmillan.

My Dad is a very reserved man but he has also sought some advice and attends a local support network too with my Mum.  He speaks very highly of it so you never know, your husband may change his mind on things!

Is he not under a district nurse now for anything?  If he isn't then yes, I guess you'd have to ask your GP.

x

We appear not to be in any system except for the hospital, who are absolutely brilliant. Everyone is so kind and friendly. 
Going back there on Monday for a blood test so will enquire further. 
Thanks for the tips. X 

Hi Simon, I have only just joined this group after my younger sister of 41 was diagnosed with Stage 4 bile duct cancer. She has just started targeted chemotherapy but is also a great believer in the power of the body to heal itself. She has gone on a strict diet and taking various supplements. I wondered what has helped your wife? I hope she is ok & fighting this terrible disease. 

Hi Ellie, I’m new to this group after my younger sister has been diagnosed with bile duct cancer with none of the risk factors. We are all devastated and want to do all we can to help her. How is your mum now? Have you found any specialists or research trials to help? Julia x

Hi. I have intrahepatic cholangiocarcinoma which spread to my Piritoneum and Liver.

I have been having Chemo (gemcis) since the beginning of December’24.  Two weeks of a full day of it and one week off then start again. There has only been one week that I was ill afterwards and that was about three weeks ago (end of March). After my first treatment I felt great and almost floated out of the hospital and had loads of energy. Since then it’s been varied from loads of energy which is probably the 3 days of steroids you are given, to feeling tired, in which case I sleep. Tumour in my Liver has shrunk by 2cm as of scan in March and reduced bile duct and peritoneum. I am still on morphine slow release twice a day and only take oramorph as a top up if needed (very rarely). 
I cannot tell you how much better I have felt since starting this mix of Chemo. For me it is fantastic. 
my husband and I didn’t think I would make it to Christmas last year as I was so so ill, so we are delighted with it.

of course this is palliative chemo but at least it is giving me a better quality of life for now. Two new 1cm tumours have appeared in my Liver now which were not on the original scan so that’s were I am at the moment. Due to have another scan in May and see Oncologist again. 
Hope this helps ease you and your husband’s mind re- GenCis. All the very best.