Hi
I am new here but really keen on getting advice and or opinions. I was diagnosed with Cholangiocarcinoma in January after initial diagnosis of gallstones as I was jaundice. Sent to A&E and within 24 hours was told I had stage 4 terminal BDC, it's has also spread to liver and lymph nodes. Recently had my 1st session of chemo/immunotherapy, was fine for a few days then went downhill fast, admitted to hospital more scans and tests done, and was fold it had now spread to pelvic bones and possibly spine. I have been in several times with suspected infections but they never seem to find where or if there is any infection for definite. I am due to have another round of chemo next week but I am seriously considering not going ahead. I was toldni have a about 6 months to live in January, done really want to spend what is possibly the last 3 months of my life in & out of hospital for chemo/infections etc or actually enjoy the time I have left with my husband, children and grandchildren and ticking things off my bucket list?
Even though it's terminal I said I would fight it with all I have until my last breath as I want to enjoy my remaining time on this planet.
Any experiences that you have gone through whilst be appreciated, positive and negative.
Thank you.
Hi,
I am so sorry to read your post, you sound an incredibly brave lady. I’m afraid I have no experience of your diagnosis and treatment but I wonder if you have looked at the AMMF website? They also have a very active Facebook page (Cholangiocarcinoma Support UK & Europe) where I feel you may get support & advice. Are you being treated at a specialist hospital, if not you can ask for a referral, and second opinion. Wishing you the best outcome whatever path you decide xx
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