Hi, has anyone had any experience of Molecular Profiling? I have heard it’s really good in identifying specific mutations and therefore being able to provide targeted therapy even for Stage 4.
Please don’t accept the consultants reluctance at face value and ask for a second opinion.
There have been three new drugs approved by NICE in the last 12 months and there are trials available.
I had molecular profiling done and went on a trial. Even though I’m stage 4, I haven’t needed any further treatment for the last 4 years and my tumour appears dormant.
I am under Prof Bridgewater at UCLH and he is a leading authority on bile duct cancer and trial drugs.
I’m shocked to read that your consultant is reluctant to do molecular profiling! You shouldn’t need to ask. I’m still awaiting one part of mine, but I’ve already been told I don’t have the gene mutation which a targeted therapy is used for. Definitely get a second opinion, and consider contacting PALS at your hospital.
Hi Andy, I am really pleased for you, that’s amazing and so positive! I guess they found your specific genetic mutation? Would it still work if it wasn’t caused by a genetic mutation? Were you offered it at the point of diagnosis or following treatment? I really need to find out more about this. Thank you so much for your post,
Actually, I didn’t have any actionable mutations but the trial was designed for this.
Occasionally, trials do come up for this category but the majority are for targetted mutations.
Prof Bridgewater at UCLH is my oncologist and he’s a leading authority on Cholangiocarcinoma and trials. He chairs a lot of the UK trials and is right across all trials for bile duct cancer in the UK. I went private for my first consult and then switched back to NHS after. My GP told me off for circumventing due process, but I didn’t feel I had time to wait on people and paperwork. Prof B is incredibly busy as most cholangio patients get referred to him and he is a wonderful person as well.
I have put it in other posts, there is a cholangio charity that doesn’t do anything else but support research, patients and raises awareness in the public and NHS.
They can be found at ammf.org.uk
There is also a FB group called
“Cholangiocarcinoma Support (UK & Europe)” that has 1,000 members both patients and carers in case you haven’t come across them. I find them incredibly useful.
I don’t think they test for causes, but don’t know for sure. They don’t have a lot of data for things like survival rates etc. I was offered two types of chemo alongside immunotherapy. I did consent to it, but when I saw what it entailed, I changed my mind. I joined the Facebook group and they are amazing! They are happy to answer any questions, and are very honest.
