Molecular profiling

Hi Andy 

I hope you don’t mind me butting in!  I have asked my hospital if there is any alternative treatment to gem/cis and durvalumab, and the nurse doesn’t seem to think so. I’m wondering where else to turn. Did you get referred for a trial, or was it just “luck”? 

Thank so much ️

Ok that’s really helpful, thank you  

Hi Jools,

No problem at all. Through reading articles and getting in touch with other patients, Prof Bridgewater’s name kept coming up. I had done Capecitebine but the disease kept spreading, did well with Gem/Cis but after a few months that stopped working, so I was short on options and made an appointment to see him privately. It was sheer luck that a trial was about to begin that I was eligible for and didn’t require any mutations. 
Have you tested for possible mutations? 
If you go to ammf.org.uk and click on “Menu” —> Cholangiocarcinoma —> Treatments you will find a list of all available drugs that are available to treat bile duct cancer. It doesn’t include trials but I think there is another page that does. You can also email AMMF directly.

I hope this helps!

All the best!

My pleasure!

Good luck to you both, would be interested to hear how you get on with the trial Andy. Thanks for the info and advice.

Hi Jules, 

I was only on the trial for a few months and then my kidneys were impacted. That was 4 years ago and I haven’t had any treatment since and the tumour shrunk by 40% and then went dormant. Another 10 months and Prof B says he won’t need to see me anymore. I can just arrange annual scans with my GP.

Hi Andy thank you so much for your help. I was aware of AMMF, but didn’t know they list available treatments. I will have another look at their website. I have my last bupa counselling session today. I think I’ve made a final decision regarding any treatment, but not quite 100% sure, so I’m going to take up the offer to go to my local hospice. I hope you’re okay? 

Good luck with whatever you decide to do, hope you’ve the support you need x

My pleasure Jools.

Wishing you all the best for your session today and for the future.

Anything I can do to help, please let me know.