Its been a strange few weeks. Getting back mobile has been my main priority after nearly three months of immobility and then slowly increasing capability. I had been looking for ward to getting into the swim again and was able to attend the Cancer Outcomes Conference organised in Belfast by NCIN, more of that in a later blog.

On Saturday I was at the Sarcoma UK Talking Research event in Manchester. What a great day ! Sarah Macdonald (SUK’s Head of Research) had done a tremendous job in selecting and briefing top scientists and clinicians and the audience of patients and carers (about 200) (plus a few non-speaking doctors and nurses) engaged and learned. Everyone spoke at a sensible level of understanding, scientific terms were explained, and concepts which are difficult to get hold of used explanatory slides. As a scientific meeting with a patient focus it was exemplary. I’ve been to a few in my time but none to beat this.

Dr Gareth Veal from Newcastle gave the best explanation of cancer pharmacology and its role in helping get the best dose of drug suitable for an individual patient. A translational study is running alongside the EuroEwing 2012 clinical trial so the Newcastle unit is turning its research understanding into clinical value and, hopefully, increased benefit for each patient in the study.

Dr Robin Young is a medical oncologist in Sheffield with an academic research role as well. I first met him some years ago when he was working on his PhD and was impressed by his commitment to a dual clinical/science role. He was working on angiosarcoma then and his work has taken an unusual direction looking at the commonalities between angiosarcoma in humans and dogs. This stemmed from discussions at the British Sarcoma Group four years ago with a leading veterinary oncologist. Angiosarcoma is common in larger dogs. The tumour similarities are apparently strong and the study is looking at how development of new treatments might be trialled in dogs and those results could benefit human patients too.

I had the privilege of giving a short lecture in memory of Paul Robson, who died in a heart operation in January. Paul was a long-standing sarcoma survivor, an active advocate locally in the East Midlands and latterly working with Sarcoma UK nationally too, on behalf of sarcoma patients. My personal reflections about involvement in research as a patient go back more than 12 years, starting when times were different. I kept it short. I was joined by Mike Francis and Chris Copland who are both deeply involved with EuroEwing. Chris is also attending and speaking at international paediatric cancer conferences making the patient/carer voice heard. Sarah Welby, the sarcoma research nurse from the Christie Hospital, described her role and how they worked to ensure that patients in clinical studies received the best care.

After lunch Professor Ted Hupp from Edinburgh talked about the p53 gene and his research into how this gene, which seems ubiquitous in cancer, probably has a key role to play in the treatment of sarcomas. A study with an experimental drug targeting p53 showed benefit for a cohort of liposarcoma patients. Sadly the company owning the agent decided against developing it further – a story we have heard rather too often with sarcoma drugs. It is clear that the pharmaceutical industry business model is far too focussed on common cancers.

Dr Paul Huang from the ICR in London looked at drug resistance to tyrosine kinase inhibitors, with a focus on pazopanib (Votrient). He started with a diagram of a cancer cell, and then said it was a simplified version, to everyone’s gasp of horror. He described how pathways could be defined and using a London Underground metaphor explained how cancer was clever, and found new routes to its objective when its first route was blocked. Understanding this in sarcoma patients will help identify those more suited to targeted therapy and also point to other therapies if applicable. This research is opening up new understanding of how cells work and could have ramifications much more widely for development of tyrosine kinase inhibition.

The last speaker was Dr Nick Gough, a palliative care specialist who undertook one of the first studies funded by Sarcoma UK. It is an extensive view of quality of life in advanced sarcoma with both qualitative and quantitative elements to it. It generated a lot of interesting data and Nick provided an updated view (there have been posters and previous presentations at various conferences). The final paper has been prepared and will hopefully be in print later in the year or early 2016.

The morning session was chaired by Dr Mike Leahy, medical oncologist at the Christie, and the afternoon session by Professor Lee Jeys, orthopaedic surgeon from Birmingham and Chair of the NCRI Clinical Studies Group for Sarcoma. Both have a relaxed and easy approach which patients readily appreciate and which the speakers could echo. There was real appreciation of the accessibility of the talks.

To close the day Richard Whitehead MBE, Sarcoma UK’s patron, Paralympics gold medal winner and the world’s leading marathon runner on prosthetics, talked about his 40-day 40-marathons run from John O’Groats to Lands End. A truly inspiring man, a great story and a real high with which to finish a great day.