I’m so incredibly fortunate.
I did have metastasis last year but good fortune, some combination of the therapies/diet/lifestyle, and a huge dose of good luck leaves me today with a good quality of life and much to look forward to.
Stay strong, become a courageous researcher and advocate for yourself, or if you are so blessed hopefully you have a caregiver who will provide this role for you.
Get second, third and fourth opinions and explore alternative avenues of care if that is in your nature. Encourage research and funding for Cholangio anyway you can.
This isn’t an easy disease . I wish you all could share my current, and I know I am in a grace period, good fortune.
Love lots!
-Peter