Help Jenefer access treatment for Liver Cancer

My name is Jenefer Llewelyn. I’m a 48-year-old married mum of three young children and a medical doctor/GP (working in a Women’s Prison) from Gateshead, North East UK. Plus a devoted Chorister at Newcastle Cathedral.

Prior to studying medicine as a graduate, I completed a PhD in Molecular Oncology & Cancer Research at Guy’s Hospital London.

Over this summer I noted a few episodes of mild right upper abdominal pain and on/off right shoulder tip pain. Things then progressed quickly….

This August, 2023 following a liver biopsy, I was diagnosed with stage 3 Cholangiocarcinoma (CCA), which is a very rare, highly aggressive form of primary liver cancer that forms in the bile ducts. Recent epidemiological studies indicate a worldwide increasing incidence, yet exactly why is unknown.

Sadly, as in my case, by the time this cancer begins to show symptoms, it is too advanced for surgery, which is currently the only potential cure. Liver surgical specialists advise me a liver transplant is not an option for me either.

The only explanation for it is that I have suffered with ulcerative colitis for 22 years - a chronic inflammatory bowel disease (IBD) which has fortunately been in remission for several years. IBD is linked with this type of liver cancer and is likely why the bile ducts inside my liver have become inflamed and scarred, and will eventually narrow and become blocked as the CCA grows.

Most heartbreaking is that doctors estimate my life expectancy to be measured in months due to the severity of my cancer; hopefully up to 12 months from the time of diagnosis.

Fortunately, treatments are available for CCA that can prolong life expectancy, and I am determined to do everything I can to increase the time left I can spend with my family and friends.

I have started the first line GemCis chemotherapy, which is available on the NHS. The aim of this treatment is to help shrink and control tumour growth, thus helping to control my liver pain.

However, there are more experimental treatments, potentially with the most significant and life changing impact, that have not yet been approved for NHS use.

This includes Durvalumab (TOPAZ-1 Trial), an immunotherapy drug which activates the immune system to fight against the cancer cells. It is currently in the process of being approved by the NHS for wide-scale use. Durvalumab is used as a first line treatment alongside chemotherapy, and has shown to significantly improve overall survival and life expectancy.

But, being currently less available and expensive, I have been refused this treatment upon compassionate grounds and advised by the drug company I would need to fund this treatment privately. This costs around £6000 per treatment every 3 weeks and I would need multiple treatments.

Other immunotherapy drugs are being developed and tested and will hopefully soon be available for use in the fight against CCA. Many are tumour marker specific treatments only, depending upon the individual tumour.

Unfortunately, waiting for the approval of these new treatments to be approved proved for administering takes time. It may take years for the approval of these various experimental treatments to be issued by the NHS and time for me is running out.

Accessing these drugs and treatments privately is costly and very difficult, especially since I feel too unwell to work as a GP whilst I’m receiving chemo.

I’m asking for help and praying for your kind financial donations towards helping me access treatments, a second opinion and to enable our family of 5 enjoy time together, or perhaps even a short holiday. Money is a struggle currently.

As quoted in the book I read to my children, ‘The Boy, the mole, the fox and the horse’ written by Charlie Macksey, “Asking for help isn’t giving up”….”It’s refusing to give up”. This is the poignant message I’d personally like to demonstrate to my kids.

I’ve always believed anything you put your mind, heart and determination into can be achieved; sometimes together with the support and kind help of others along the journey.

A percentage of the total donations will go the AMMF Charity - The UK’s only Cholangiocarconoma charity - www.ammf.org.uk

If, or when I no longer need treatment for my cholangiocarcinoma - for whatever reason, all of the remaining funds will be donated to the AMMF and the NCCC at the Freeman Hospital, Newcastle upon Tyne.