Welcome to Cancer Chat. I'm sorry to hear of your situation and I hope you're getting on OK. I also hope that the forum can provide some support for you - my reply here will boost your post, meaning a few more people should see it and so hopefully you'll receive some more replies soon. You can also try searching the forum (using the button in the blue bar above) for other relevant discussions on here.
We're always here if you need it. Wishing you all the best,
My wife was diagnosed last August. It is rare and difficult to treat. I haven't seen many messages posted on it. However I saw your message and thought I would say hi. She is trying to get on with chemo but is being hampered by constant infections. It is a bumpy ride at the moment tbh..
Ive been having Chemo since then which has thankfully eased the symptoms. I’m 67 female. Had no real symptoms apart from nausea fatigue and weight loss. I was diagnosed with Intrahepatic Cholangiocarcinoma stage 4
Hope your wife is doing better and got over the infections
Hi, how are you doing? My mother has recently been diagnosed. She had jaundice so they fitted in a couple of stents which caused sepsis! Luckily she has recovered and will start chemo next week. I'm very nervous about it. I'm worried that she will get very I'll from it. We are hoping it will shrink so that they can operate. At the moment the Tumour is in contact with the artery so they can't operate til it shrinks. It's a very worrying time.
I'm sending love to everyone who is going through this or whose family is going through this.
I have been told my cancer is terminal. No hope of an operation. The cancer has also spread to the liver and the lungs so although the outlook is bleak I am just taking a day at a time.
Your mother is in a better position the Chemo can be hard going but it’s not as bad as I thought it would be
Just been diagnosed too. Been trying to find out since April. Consultant thought I knew when he spoke to me on Thursday so no one had had The Chat with me. He just kept saying "for the tone you have left". I didn't realise this at all... I'm reeling... (61 years old female.).
I was diagnosed with cholangiocarcenoma last January. It isn’t operable and I’ve had two types of chemo that didn’t work and made my neuropathy a lot worse. I’m now itchy and quite tired. I had a recent biopsy which shows I have a targetable gene mutation. It has not been approved by NICE but may be in the new year. It will then be a decision between longer life or possible bad side effects, I’m 79 and hope I continue to feel fairly good.
Hi I hope you don’t mind me asking, but have you got a treatment plan yet? I’m being offered chemo/immunotherapy, and am still trying to find out something about the side effects in real people, not fact sheets!
I’m hoping to have Ivosidenib to be approved this month by NICE as I have a particular gene that it could target. I’m a lot worse as I’m pretty sure my bile duct is blocked as I have terrible itching and pale stools and dark urine, and I feel worse. I’m not yellow yet.
The chemo that I’ve had GemCis and FOLFOX didn’t work for me, the side effect weren’t bad except for neuropathy which I was already suffering from. Everything seems awfully slow, scan results, biopsy results etc.
im just hoping I get some answers next week from my consultant.
