Support Life-Saving Treatment for Jonathan
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After exhausting treatment options in the UK, we urgently need to raise £350,000 to provide Jonathan with life-saving international treatment
My husband Jonathan is a kind, selfless, 48-year-old man and an amazing dad to our two children Amelia 11 and Charlie 9. Aside from some (rather nasty) side effects from the various treatments he’s gone through, he has had no symptoms, but the reality is he is dying of a very rare form of cancer, Mucosal Melanoma.
It all started as lockdown hit when he noticed changes to a childhood mole. I remember the day he was diagnosed, it was during COVID and so I wasn’t allowed into his appointment and had waited outside in the car. When he came out, we sat in the carpark and cried. He’d just celebrated his 45th birthday.
Four years on, our family’s journey with cancer has been a whirlwind of hope and disappointment (you can read more below). It’s included amazing treatment at The Royal Marsden – six surgeries including a ground-breaking surgery to be featured on Ch4’s Super Surgeons in summer 2024, immunotherapies and a clinical trial.
Jonathan faces each challenge with courage and resilience. In addition to the many hospital visits, surgeries, and treatments, we’re still parents to our two young children. School runs, work, kids’ clubs, and dog walks simply don’t stop for cancer. The world carries on even though it feels like ours has been brought to an abrupt halt.
As options for treatment on the NHS in the UK run out for Jonathan we have been exploring international alternatives. TILs treatment, successful for other Mucosal Melanoma patients in the USA, remains inaccessible in the UK for his cancer. Jonathan's only chance at accessing this innovative treatment lies in fundraising efforts to generate the (£350K) needed.
And this is where you come in!
Despite having FDA approval in the USA and other countries TILs is not yet available for Mucosal Melanoma in the UK and so we are looking to fund this ourselves and we need to start as soon as possible.
Friends and family are digging deep but anything you can afford will mean a great deal and we hope will help Jonathan beat this cancer. We would greatly appreciate it if you could also help spread the word about our fundraiser on social media or by reaching out to anyone who might be able to support our cause. Rest assured, we'll keep you updated on our progress and milestones through regular updates on our page.
We will not give up hope when there is an option open to us. If for no other reason than our two children, Amelia and Charlie.
On behalf of Jonathan, Amelia, Charlie and I (and all of our friends and family), we offer our heartfelt thanks in advance for your support.
Thank you.
Rebecca, Jonathan, Amelia and Charlie (and Bella the dog)
More about Jonathan
Jonathan has always been fit and healthy and barring the side effects of the cancer treatments, still is. Which is why this stings so much and often feels so profoundly unfair. His physical fitness has helped tremendously during the treatment in that he has bounced back quickly from surgery. For example, his being able to leave hospital after major surgery in just five days instead of the predicted 10.
He loves cycling, running and has completed several events to raise between him and Rebecca £8.5K for the Royal Marsden charity so far this year alone.
In his day job he has a successful career managing IT projects for charities and is still working part-time around his treatment. His other love is music. We met over 20 years ago when he was DJing at my house party. He still loves a slot on the decks and here he is DJ-ing at my 50th party recently!
More about our cancer journey
It has been a long, challenging and often heart-breaking journey but not one that we’re prepared to give up on!
- March 2020 (COVID lockdown) – Visit to the doctor with changes to a mole – cream prescribed.
- September 2020 – Return to the doctor, referral to urologist and a biopsy. Within a week we received the awful diagnosis of stage 2 Mucosal Melanoma - an extremely rare cancer. Massive shock!
- November 2020 – First time in surgery. No visitors allowed due to COVID (which was hard). Six-hour operation to remove the cancer and surgeon was confident he had removed it completely.
- End of November 2020 - Three weeks later the call came, the first of our many huge dips on this emotional rollercoaster of a cancer journey. The lab reported that the cancer had not been removed with clear margins and the operation would have to be repeated. So, on the 17th of December just as we were preparing for Christmas with our five and seven year old, Jonathan went back to University College London Hospital for his second surgery.
- January 2021 – Post operative report showed cancer had been removed with clear margins, three-monthly scans in place. We were feeling optimistic!
- May 2022 – Quarterly scan spotted something we didn’t want to hear – an abnormal growth in Jon’s lymph nodes. Lymph node removal and a positive test for Mucosal Melanoma cancer, UCLH referred us to the Melanoma specialists at The Royal Marsden
- May 2022 – First visit to The Royal Marsden to confirm cancer had spread past primary site. Within six weeks, Jonathan’s groin lymph nodes were removed. Three out of the 13 proved to be cancerous.
- June 2022 - Immunotherapy started. Our first day on the chemo ward at the Marsden was tough as seeing other people experiencing treatment made it become real. The chemo ward became our regular six-weekly haunt.
- April 2023 - Cycle eight of nine immunotherapy infusions and the consultant called to say unfortunately we’ve spotted a tumour on Jonathan’s lung. Recommendation to stop immunotherapy as it was having no effect. No treatment left in the UK. We needed to find a clinical trial while the tumour keeps getting bigger.
- June 2023 – We got married. Why not? We wanted to make memories before Jonathan got too ill.
- July 2023 – Started clinical trial. This trial had some truly awful side effects. It was a race to get home every night before the rigors and fever or chills set in. Jon managed three cycles of five days a week so 15 infusions of this before it was confirmed it was having no impact.
- September 2023 – Surgeon to remove the cancer from Jonathan’s lung with the hope that we would then have 12-18 months before anything else appeared. Jonathan’s surgery and the story surrounding it will be featured on the second series of Ch4 Super Surgeons a chance at life (https://www.channel4.com/programmes/super-surgeons-a-chance-at-life) due to be aired in Summer 2024.
- January 2024 – 6 weeks later and sadly the cancer had returned, Jonathan started dual drug immunotherapy in mid-February 2024. We won’t know if it’s working or not till after the fourth infusion around late May. In the meantime, the tumours have been growing and spreading, the largest grew 4cm in four weeks and a new one appeared near his heart with new widespread sub cutaneous growth too.
- May 2024 – Fundraising appeal launched to fund treatment not available on the NHS.
What is Mucosal Melanoma?
Not to be confused with melanoma (skin cancer), Mucosal Melanoma is an extremely rare cancer which has no cure and a survival rate past five years of just 14%. Only 1% of all Melanoma cancers are Mucosal, unlike standard Melanoma it forms in the mucus layers under the skins surface, it has a very poor prognosis as it normally presents so late in stage that it has generally moved beyond the primary site. More information here.
What is the treatment we’re raising money for?
As we have run out of options on the NHS in the UK so we’ve turned to treatments available across the pond. In doing so we’ve found some groundbreaking TILs treatment which has been proven to work in other Mucosal Melanoma patients.
Fundraising team (3)
Rebecca Muggleton
Organizer
Jonathan Muggleton
Beneficiary
Eve Daniels
Team member