Malcolm's 1/2 Marathon

Malcolm Setton is raising money for Chordoma UK
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Royal Parks Half Marathon 2021 Reimagined · 11 April 2021 ·

Chordoma UK was established in 2013 as a special fundraising initiative incorporated into UCL Cancer Institute Research Trust. Chordoma is a rare, relentless and difficult to treat bone cancer that occurs in the head and spine in people of all ages regardless of gender, race or sexual orientation. During 2017 Chordoma UK became an independent UK registered charity and exists to (a) promote and provide financial support to encourage primary and peripheral research projects into chordoma and research projects that might benefit the understanding of, and treatments, therapies, and cures for, chordoma being undertaken at bona-fide research establishments within the United Kingdom and elsewhere. (b) provide patient support services and other support resources for chordoma sufferers and those connected with or related to chordoma sufferers (c) promote awareness into chordoma within the patient, healthcare, and clinician communities. (e) support individuals and organisations whose aim is to raise funds for Chordoma UK and (f) provide financial assistance for other charities or bodies as are in any way concerned with research into chordoma and other related cancers or with the furtherance of awareness of chordoma.

Story

Thanks for taking the time to visit my JustGiving page.

Last November I had what should have been a simple procedure (Septoplasty) to rectify a deviated septum. This came after months of a constantly blocked nose, with no relief from any allergy medication prescribed by the GP. Finally, after an in-person consultation with an ENT consultant I was told my Septum was damaged and blocking my airway; and booked in for a procedure.

The operation was more complicated than anticipated as the consultant discovered a tumour attached to the back of my Septum. The tumour was confirmed to be a very rare bone cancer - a Chordoma. Mine had grown to 6.4cm and attached to the base of my skull, the back of my nose and top of my spine.

In January this was removed very skilfully by a team of surgeons from the Queens Square neurology team, to whom I am very grateful. The tumour was not the easiest to remove due to the size and sensitive location to my brain, which you can see in the attached image. On 21st April I will be starting 8 weeks of Proton Beam treatment at the Christie Hospital in Manchester. The Proton Beam Therapy Centre is a relatively new state of the art facility, and a centre of excellence.

Proton beam therapy is a type of radiotherapy that uses a
beam of high energy protons, which are small parts of atoms, rather than high energy x-rays (called “photons”) to treat specific types of cancer such as chordoma.

I have been wishing to run the Royal Parks 1/2 Marathon for
the last 3 years and only last year gained a place. This has been postponed and is now taking place 'virtually' on 11th April. Having not run since October 2020, I have slowly been easing myself back into training after recovering from my surgery in January. I have a target time for the 13.2 miles of sub 1 hour 40 minutes!!

I hope that my efforts training for and running this half marathon will enable me to raise much needed funds for further research into effective treatments for Chordoma cancer. At present there are no known drugs that are effective treatments for Chordoma cancer. Removal of the tumour (where possible) and proton beam therapy are the only ways of tackling the disease.  However, you can see from the information I've provided below that research is underway to try and find more effective treatments. I hope that my efforts will go some way towards helping fund this cause.

Finally, I just want to say a huge thank you to my friends, family and work colleagues who have been massively supportive over the past 4 months. I am extremely grateful to be surrounded by and work with such a fabulous bunch!

Malcolm

Why are we supporting Chordoma UK?

Over the last few years, Professor Flanagan’s research team
and colleagues have taken tumours from patients treated at RNOH , and 5 chordoma cell lines have been established from these tumours. This means that for the first time, a reasonable number of cell lines are available to screen against a large number of drugs / compounds (1,000-2,000), some of which are already used in the treatment of other tumours, and some of which are in development.

By studying the effect of hundreds of drugs on the chordoma
cell lines we should be able to identify what induces the expression of
brachyury (a protein associated with chordoma development). If this can be identified, we have other potential targets to which drugs can be developed.

What is Chordoma?

Chordoma is a very rare (1 in 800,000) form of primary bone cancer,
meaning it arises in bone (rather than spreads to bone). The bones involved are those at the base of the skull (approximately 30%), the vertebral bodies & spine (approximately 20%) and the bone of the sacrum and coccyx at the base of the spine (approximately 50%).

Chordoma is thought to arise from a persistent embryonic tissue (notochordal cells), which normally disappears before birth, but can
persist in some people. However, the majority of individuals with notochordal remnants do not develop chordoma. Chordoma is generally slow-growing and the nature of the tumour often makes diagnosis difficult to determine.

Chordoma is one of a family of cancers called sarcoma, which
include cancers of the bones, cartilage, muscles and other connective tissue. Symptoms of chordoma vary significantly and in the event an aggressive chordoma spreads (metastasis) it will most commonly affect areas such as the liver, lungs, skin, bones or lymph nodes.

Donation summary

Total
£7,213.35
Online
£7,013.35
Offline
£200.00

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