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.).
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.).
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.
Thank you so much for replying. I’m sorry that you sound like you’re further down the line than me regarding your condition. GemCis is the chemo I’m being offered, along with Durvalumab immunotherapy. I’m already suffering with an itchy rash, but luckily only across my shoulders. I only had a liver resection and wedge just over two months ago, and am still getting over the fatigue. I’m still waiting for the results of analysis to see if I’m suitable for anything else. I’m really sorry that you put yourself through treatment for it to fail. I hope NICE approves this new treatment soon. Choice is everything. I wish you all the best.
