Miranda Filmer’s story

(I’m thankful to Miranda’s parents Charles and Antonia Filmer for access to several files and pieces of information).

Miranda was a geographer, who loved a chat about tectonic plates or volcanos, and a “researcher” with an MScR in equine hydration, a subject which she made sound surprisingly compelling.  But mostly she was an extreme sportswoman: equestrian, cyclist, skier on snow and water, swimmer, runner and lacrosse player; everything she undertook she did enthusiastically, including an episode of rock climbing. She had a cheeky sense of humour and set herself very high standards.  She was an extraordinary human being. 

The Diagnosis

Miranda was 25 years old when she was diagnosed with an “intermediate grade” Neuroendocrine Tumour of unknown primary.  She had been experiencing crippling stomach pains for several months that had not been attributed to anything specific.  After several agonising midnight visits to the local Accident & Emergency department, a nurse spotted something on a lung X-ray and insisted that the registrar on duty conduct further investigation. The resulting CT scan highlighted many tumours throughout her lungs, liver, lymph nodes and hilum. A biopsy confirmed the diagnosis. Her specialists were surprised to find cancer in such an apparently vibrant and healthy young woman. 

Miranda and her family were shocked by this news, and she was referred to Royal Free Hospital in London for an appointment with Dr Daniel Krell, an Oncologist on their NET multidisciplinary Team (MDT) led by Professor Martyn Caplin.  Simultaneously, her father, Charles, took advice from the Sloane Kettering, Mayo Clinic and the Royal Marsden Hospital, who unanimously concluded that Professor Martyn Caplin was the foremost expert in Europe for Neuroendocrine Cancer and that she was in the right place.  

The treatment

Over the next few years, Miranda undertook several classic treatments for NET including Peptide Receptor Radionuclide Therapy (PRRT), Chemotherapy, Everolimus (Afinitor), Lanreotide, Octreotide and two liver emobolizations. She also developed spinal bone metastases over the same period and had kyphoplasty spinal surgery by mastercraftsman Daniel Plev who rebuilt 3 of her vetebrae. In May 2020, scans revealed disease progression in liver, bone and lymph nodes. By summer, this resulted in bone tumours pressing against nerves in Miranda’s groin, causing excruciating bone and nerve pain in the pelvic area. During this period, Miranda lost the use of her right leg and was unable to ride for a period as she was on crutches. This was devastating for her. It must have been clear at this stage she had a more aggressive cancer than most. In 2021, Miranda started to show signs of weight loss and difficulty swallowing and she continued taking oral chemotherapies.   

In 2022, Miranda began intravenous chemo at home, as travelling to London was too exhausting and she was weak from still losing weight.

Then in April of that year, a significant change in her diagnosis and outlook confirmed via a liver biopsy which showed the tumours in her liver had changed their structure and become high grade and extremely aggressive.  Her doctors recommended one last treatment to try, a trial combining Immunotherapy Nivolumab and Ipilimumab. Miranda agreed to have this in London in early May. She was already weak and very thin, and she did have debilitating side effects after this treatment.  Miranda’s swallowing had now become a problem, she was experiencing severe abdominal pain and was hospitalised in the middle of May, her kidneys were also not functioning properly.