Help Jenefer with immunotherapy for terminal liver cancer

Hi everyone, It’s Jenefer - in September 2023 I was diagnosed with terminal, incurable bile duct cancer of the liver. It was a complete shock to us all as I hardly had any symptoms apart from intermittent right shoulder pain and nausea.

Thank you for reading this second GFM. So after my chemo ended in April 24 (which wiped my bone marrow out!) I needed a break in treatment. Unfortunately a break in treatment, meant the intrahepatic cholangiocarcinoma (bile duct cancer) had a chance to spread. It is known to be highly aggressive.

My latest scan showed a new liver lesion and several of the current ones to have grown back to their size pre-chemo. Most disappointing for me is that I now have lung metastasis since it’s. Spread. I worry how lung cancer will affect my breathing, fitness levels and singing voice (as a chorister).

Thanks to your kind donations previously, I’ve been able to access the “best” novel immunotherapy for a specific mutation my tumour has which costs £9750 per month (as private medicine), and I already feel less pain and nausea since taking this drug.

It’s not clear when NICE will make this drug available on the NHS - possibly January 2025, but I am desperately hoping it’s a matter of weeks due to the cost. Somehow, I need to continue raising money.

This drug works to slow the progression of my cancer via acting on genetic markers. It can shrink the tumours and reduce my ongoing pain (which is already happening thankfully). This treatment can even lead to tumours becoming small enough to be surgically removed. I’m informed a few trial patients have been on this immunotherapy treatment for 5 years plus - when told they only have months to live. Can you imagine how wonderful it would be to watch my children grow up?

Otherwise, I’m enjoying time with Alan, Kirsten 12, Elspeth, 10 and Christopher 5 who are being very brave about mummy being ill (including Alan).

With treatments I have lost a lot of hair so now wear a wig named “Ruby”. Ruby is far more luxurious, thicker and longer than my real hair has ever been. Wearing a wig has taken quite a bit of getting used to for me and the kids.

I miss working as a doctor and science. I feel I’ve lost my identity. I never realised that after all the training how sad I would feel not being able to use the skills acquired over 18 years. If the immunotherapy helps me feel well enough, I’d love to work for the NHS again doing teaching/researching or even seeing patients :-))

Any left over funds (if any) will be donated to AMMF charity who have been an incredible source of information for this rare cancer…. One I had never heard of when they broke the news