The last two days or so have been chaos. CRUK press office have been in touch with me soon after this saga began, and for those of you with keen memories will remember me on their Facebook page many months ago. They’ve been working their socks off for this moment over the last month or so and the press team from CRUK arranged a brilliant PR boost focussed around a PR day at the Institute of Cancer Research, which is next door to the Royal Marsden in Fulham. Although in practice all the funds from my justgiving page are sent to CRUK on a weekly basis to their big pot of cash, we suggested that the money was for a specific project for a CRUK funded PhD student who is currently working on a clever project, which hopes to improve radiotherapy in the future. Some cancers are particularly resistant to radiotherapy and they’ve found a new type of drug which inhibits a DNA repair enzyme (ATR). The student, actually a registrar in oncology who has taken time out of his clinical placements to do both a lab project in this drug and well as starting a phase 1 clinical trial.
The first person from the press to call was from the Press Association who wrote the daily mirror article all those months ago. However, instead it was their health editor who phoned, she was very friendly and told me that her mother was currently in a hospice with late stage cancer. She was much more focussed at trying to get an accurate and nice story instead of a sensational headline as her colleague had done before. Crucially she included the link in her article too. The nice story she went for, and there’s lots of nice things to choose from, was the relationship I started with Georgie. After sending her the photos, she emailed back to say how happy we looked in them. The main photo she chose was of us on the Isle of Arran. Again and this seems to be a reasonably common theme with journalists, she didn’t tell me when or where it had actually been published. A quick email would suffice! There was two errors though… firstly my family home isn’t in Wimbledon, that would be nice as it would be worth a fortune. Secondly apparently my girlfriend is a Georgie Latchman, and not Georgie Latcham. There’s only one Georgie Latcham and she isn’t worried of this imposter.
On the Monday I had planned a day out with Matt and Kiran in London. It was the first and probably last time I had to leave a museum to spontaneously have a photo shoot, this was for the Evening Standard. Perhaps to the annoyance of the photographer they didn’t use any of the pictures he took in the article. The reporter instead went for one of my twin and me, as he went for the twin narrative and the fact I’m massively excited to be Dave’s best man very shortly. The best man speech is well under way!
Tuesday Tuesday Tuesday was well, mental. Cancer Research UK had said that they wanted to get in every newspaper and well I’ve lost count. Over twenty local newspapers from around the UK and Ireland ran the press association article. After reading all the articles I’m starting to believe my family home is in Wimbledon; that many people can’t be wrong. We arrived at the press release and we had a talk from a Prof who was supervising the PhD student’s project. He did a talk and welcomed me to the institute of cancer research. I took the opportunity to; and there’s personal benefit to doing these things, talk to the Prof about a trial of Pembrolizumab (PD-L1 inhibitor) and T-Vec, which I may join if I become Dabrafenib insensitive. T-Vec is mutated herpes virus which only infects melanoma cells. Indulge me slightly for a bit and the Prof went into this, but it’s interesting why these trials are delayed. The trial initially was going to be Pembrolizumab (control group) Vs. Pembrolizumab + T-Vec (treatment group) however this wasn’t approved initially by the FDA (Food and Drug Administration – USA) because they wanted a placebo injection of the trial arm. Therefore Pembrolizumab + Placebo as the Control group. As the injection is quite invasive I guess the researchers wanted to forgo this from the trial, nevertheless a placebo increases the validity of the trial.
After the talk I was taken to the lab where the PhD student showed me his research, three times to three different camera crews. If they can repeat what occurs in humans from what is seen on the petri dish it will be very impressive. Quite simply they had cancer cells and then gave them drug/radiation and/or both all combinations, it was marked how few of the cancer cells survived after given both drug and radiation compared with radiation or drug alone, as these cells typically repaired themselves after the radiation and the drug it is thought stops this repair, therefore making radiotherapy much more effective. It may work in lots of different cancers or none when it is first used in humans, but this really is a very novel new attack method on cancer. Fingers crossed it will be as effective in humans, it’s not unfeasible to think I may be a recipient of it one day, perhaps in their phase 2 trial. The crews were from BBC London, ITV News and London Live (no I hadn’t heard of them either). For anyone who hasn’t been on TV there’s typically only one camera so it involves repeating yourself and actions a lot so they can have the multiple views we’re used to. For anyone who hasn’t done it, there’s a weird skill one needs to have, which actors must have and I certainly lack. This is being able to mimick what you just did and keep both your actions and tone of voice natural. All these interviews had been sprung on the PhD student, and I thought at least one/two TV crews would be there but not three. I enjoyed watching all of them, the BBC focussed a little bit more on the research and the ITV one more on my personal story. The reporter had actually read all the blog, she liked it too.
So was it worth it? It was very tiring and I was shattered afterwards, as much as I’ve talked about it over these last few months, it’s emotionally tiring too. I’ve had many more hits to my blog, and raised over a £1000 more and counting. But the money isn’t the most important issue, it’s about publicising the bigger issue and my story is powerful it acts as a reminder to people that we both need to do more research, but highlights the need for the NHS to fund these treatments. I’m a costly patient, so are many of us, but shouting my story around reminds people what great work one that the NHS does and two how far research and drug development has got. As the cost of my treatment is more than 2 teachers per year, to think funding cancer drugs isn’t political is a massive oversimplification. I and others need to plug the cause to remind politicians and taxpayers why they are paying for it… because they work! I’m preaching to the converted on this blog, but I’m thinking of the people on question time who say things like “surely the NHS can’t need more money?”. The emergence of efficacious yet expensive drugs is a conundrum for the taxpayer and NICE because before they could turn down treatments because frankly the evidence/efficacy wasn’t there to justify the cost. But with Dabrafenib and the newer treatments it would seem that they are too good not to fund, which is brilliant news for me. This is highlighted by NICE approving Pembrolizumab (with their trademark “undisclosed discount”) so quickly. It was approved just this month. Pembrolizumab is one of the two PD-L1 inhibitors and until that news I was thinking we’d (my parents) need to pay for one of these types of drugs at the market price. So as it stands my treatment will be continue with Dabrafenib, then I will receive Ipilimumab if I’m a non responder then go onto Pembrolizumab. A treatment course I’m pretty happy with however I’d prefer to have Pembrolizumb first as it works in a much larger number of patients, then Ipilimumab afterwards. NICE has realised that it is slightly counter intuitive to give the lesser effective immunotherapy first, therefore this is under review, so watch this space. My story goes to show the rate of progress is speeding up, let’s continue to make it even faster. Let’s beat cancer sooner.
2 thoughts on “Media Frenzy”
Hi Mark, I’ve been reading your blog this evening and love your strong attitude to all this. I’m 28 and I too am on Debrafenib waiting to hear the news on obtaining first line Pembro without Ipi. Fingers and toes all crossed. Keep writing, it’s awesome. x
Hi Jen, I hope Dabrafenib keeps going for you. At least I made the median, I am masssively shitting it waiting for ipi now. Hopefully it works. Mark x