Jon’s story – ‘I came onto the clinical trials and there was hope.'
Jon was diagnosed with bowel cancer at the age of 38 in 2017. He lives in Bristol with his wife, Emma, and dog, Sharky.
Jon was referred to The Royal Marsden in 2019 to take part in a clinical trial (RAF-MEK) on Oak Ward, benefitting from the work of The Royal Marsden Cancer Charity funded Oak Foundation Drug Development Unit.
As of February 2023, his scans show his tumour is inactive and so he is walking 150 miles over 6 days in May 2023 from Bristol to Sutton to fundraise for The Royal Marsden Cancer Charity and the Bristol Haematology and Oncology Centre (BHOC), where he was first treated, to say thank you for his care.
Symptoms and signs of bowel cancer
'I had symptoms of what transpired to be bowel cancer for about 18 months before I was diagnosed. It was mostly abdominal pain, and, as time progressed, it became more difficult to go to the loo.
Because my main symptom was abdominal pain, it was initially misdiagnosed as gastritis, which is irritation to the stomach lining and I was back and forth to the GP, but eventually, I was referred to the gastro specialist at my local hospital in Bristol.
That was August 2017, and I was told: you’ve got bowel cancer. '
Referral to The Royal Marsden
After several rounds of chemotherapy, a hemicolectomy, and an ileostomy at BHOC the cancer was still spreading and treatment wasn’t working. He was then given the option by his oncologist to be referred for clinical trials, which Jon was keen to find out more about.
After some blood tests, a scan and an introductory chat, Jon joined the RAF-MEK trial at The Royal Marsden Sutton. This was a targeted therapy where he took tablets every day for a set period of time on Oak ward, benefiting from the work of the Royal Marsden Cancer Charity funded Oak Foundation Drug Development Unit.
‘I was relieved that there was going to be an option open to me and just to have that hope was major.’
Jon was on this first trial for over a year, but then the drugs stopped working.
Second clinical trial begins
‘Even six months before we got to the end of the first trial, they were doing a genetic analysis on my tumour to understand what other drugs might be beneficial for me. They established that there were a couple of mutations in there that might lend themselves to an immunotherapy trial that was already in the pipeline for other patients.
They said to me, “Don't panic. We're going to set you up on Ice-CAP”. I just needed to wait a month for the RAF-MEK drugs to clear my system, and then I was ready to start the new trial.’
The Ice-CAP trial saw Jon back on Oak Ward, taking a combination of two drugs, an immunotherapy drug called Atezolizumab and the targeted drug called Ipataserib. This trial was the first time that the two drugs have been used as a combination therapy.
‘I was on that trial for the best part of 2½ years, seeing no evidence of growth in the tumours. I had next to no side effects from the treatment – just 24 hours of mild fatigue after each dose. It was a fantastic feeling,’
Pneumonia and some positive news
Then in Spring 2022, what looked like growth in the tumour on Jon’s lung was spotted. He was quickly put forward for a different clinical trial, however before he could begin the trial he developed a chest infection that turned into pneumonia and had to spend 5 weeks in hospital.
‘I was discharged from hospital and have subsequently been scanned in November, December, January and February. These scans found that the consolidation on the lung from the pneumonia – compaction, inflammation and mucus – had gradually reduced, which was really positive. Moreover, it also appears that the tumour hasn't grown since the Ice-CAP trial.
I’ve therefore been taken off treatment now, and the picture looks good. We’re just going to keep an eye on things, and scan every three months. As long as there's no activity, we’ll leave it there. We are in a good place and I’m feeling very well.’
Saying thank you to The Royal Marsden
“The only reason I'm here today, over five years post-diagnosis, is because of the clinical trials at The Royal Marsden. I am so grateful for the amount of time and resource that’s gone into my care, and I just want to raise as much money as possible to help others.”
‘The team has been fantastic, not just the nurses and doctors, but also the support staff and everyone I’ve been in contact with.
From the volunteers on the front door to the clinical nursing specialists, to those who don't necessarily administer medicine but who helped me sort out my financial admin. When I was admitted with pneumonia, an amazing healthcare assistant took my dirty laundry home with her, washed it for me and then brought it back the next day. That’s really going above and beyond.‘
Jon’s fundraising walk
Jon is walking 150 miles from Bristol to Sutton, from the hospital he was first treated at to The Royal Marsden, to raise money for The Royal Marsden Cancer Charity and The Friends of Bristol Haematology & Oncology Centre (BHOC).
We’ll be sharing more from Jon’s walk from Bristol to Sutton in May, in the meantime you can find out more and sponsor him on GoFundMe here.