A tribute to the life and legacy of Miranda Filmer

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It’s true to say that Neuroendocrine Cancer is an older person’s disease, the epidemiology is clear on that.  But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease.  There are others but I find these are the most common scenarios I see in younger people.  For me personally, as a father and a grandfather, it’s often heart-breaking to read these stories. 

I wanted to write about one of the latter scenarios, a younger than average person with an aggressive version of our disease and one that eventually was the cause of her death.  It caught my eye for a number of reasons, not least of which was she had accepted the possibility of the outcome but still found huge strength, tenacity and positivity in life. She never complained about having cancer, she didn’t want to be defined by the disease and she was not afraid of dying. Moreover, as difficult as you may find this story, she did not want anybody to be miserable about her death, but she did want to be remembered. 

This is the story of Miranda Filmer and the legacy she is leaving behind. 

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. 

Miranda’s approach

The story above is not complete without mentioning the approach Miranda took in dealing with this devasting change to her life.  Instead of curling up in a ball, Miranda continued at pace with her adventurous and sporting activity, in particular her love for horse-riding.  

Credit Topshots

Miranda chose to override the side effects of her cancer and the treatment.  She decided the best way for her to do this was to get on a horse or two the very and every morning after a treatment. Her mother remembers her barely with the strength to mount her beloved horse Lusitano horse ‘Fissa’, but once sitting in the saddle, the trust and comfort she found on horseback was there for all to see. 

After a period of response to treatment, she joyfully went back to competing in British Eventing.  She continued to ski, even after surgery on her vertebrae.  During covid lockdowns in 2021, she continued to ride horses, cycled and completed her Masters, she even began looking for a job, eventually finding one in publishing, mainly working in the international horse racing world.  Despite the challenges brought in 2022, she was enthusiastically planning for future horse-riding events. 

Miranda returned home from hospital on 1 June 2022. A few days later she was told there was nothing that could fix her.  She took this stoically and practically leaving instructions for what she wanted as she contacted various people to let them know. 

Miranda died on 10 June.

Patient experiences can be so different, and so difficult to foresee

In the last 8 years of researching Neuroendocrine Cancer for my blogging work, I have always wondered why some people have a more aggressive and less responsive to treatment experience than others. This also includes those with well differentiated Neuroendocrine Tumours rather than confined to poorly differentiated Neuroendocrine Carcinomas.  

What I did find is that a lot of work is going on behind the scenes in the molecular profiles of many different types of cancer and this work is finding many nuances. Despite some progress, little is known regarding the underlying genetic makeup of these tumours leading to a lack of an understanding of the genetic differences between well and poorly differentiated types.  Knowing these differences through genomic profiling could lead to better development and then lead to better therapies to improve treatment options for patients with these tumours.

Genomic profiling can be a game changer

Miranda’s parents, Antonia and Charles Filmer, have set up a research project with The Royal Free Charity and Professor Martyn Caplin to advance the use genomic profiling and the impact of the heterogeneity to treat neuroendocrine tumours. Genomic profiling helps researchers understand the genes in a person or a cell type, and how they interact with one another and their environment. This could help reveal why tumours present more aggressively in some patients and lead to more efficient personalised treatments.

It’s worth noting that like all major NET centres of excellence, Royal Free aims to collaborate with other NET centres of excellence, in particular in the clinical aspect of the research so that clinical trials developed as a result of their laboratory-based research could be delivered at other centres, to maximise both patient accrual into trials and also ensure that NET patients in other centres benefit from their research findings.

Is this the most important subject in Neuroendocrine Cancer research?

In the emerging era of precision medicine, criteria to assure drug efficacy and patient safety are critical. A balanced evaluation of cost-benefit ratios of high value therapies is also of utmost importance.  Increasingly, molecular biomarkers for predictive disease modeling and patient stratification are emerging, driven by the realization that genomic information facilitates understanding the architecture of disease. The molecular characterization of Neuroendocrine Neoplasms (NENs) has lagged behind.

The next text block below will introduce the Miranda Filmer Research Overview being undertaken at the Royal Free and is one project involved in this area of research.  This is a very exciting piece of work. But this work needs funding, and the second block will introduce the Miranda Filmer Appeal where you can find out how to donate to this vital work should you feel the need.  The Miranda appeal has already reached £365,000 but more is required.  Please consider donating and then sharing this post to help ensure this research can complete in order to help doctors develop new and more personalised treatments and to decide on the best treatment for each individual.

Miranda Filmer Fund research overview

Click here to download and read the PDF

Click on the picture to read more.  Picture credit:  Topshots

The Miranda Filmer Appeal

Click here to download and read the PDF

Click on the picture to read more. Picture credit:  Topshots

How do I donate?

There are two ways currently:

1. Contact Royal Free Charity to discuss your support, please contact:
fundraising@royalfreecharity.org or call them on 020 7317 7772 (from overseas +4420 737 7772)

2.  Click here or on the picture below:

Click the picture to donate

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. 

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.   

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. 

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.   

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

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Thanks for reading.

Ronny

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One thought on “A tribute to the life and legacy of Miranda Filmer

  • Linda Dotson

    This is a remarkable account of an incredibly courageous young woman. It is inspiring, uplifting and helpful to those of us learning to live with neuroendocrine cancer. She sends me a strong message of “Don’t feel sorry for yourself. Get on with your life.” I won’t forget Miranda.

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