This is the transcript of an episode of our podcast That Cancer Conversation, you can listen to the episode here
Hi, and welcome to That Cancer Conversation, the podcast from Cancer Research UK that brings together the science and the stories behind cancer, with me, Jacob Smith.
TUXEDO, STAMPEDE, INTERLACE, CONVERT. Whilst that might sound like I’m just saying random words, they’re actually names. Names of just four of the hundreds of clinical trials funded by Cancer Research UK.
Clinical trials are a vital step in the development of new medicines of any kind, and that includes new cancer treatments. They aim to find out whether new treatments are safe and effective and work better than current treatments.
Cancer Research UK has been funding clinical research, meaning research in humans, since we began in 1922. Our research has contributed to more than 50 cancer drugs in use across the globe today and has helped more people survive their cancer for longer.
In this episode of That Cancer Conversation, I’m going to take you into the world of clinical research and walk you through the pathway, from how we design trials in the first place, right through to taking part, to give you the full picture of what a clinical trial really involves.
So, let’s start at the beginning. I spoke to Ruth Plummer, professor of experimental cancer medicine at the University of Newcastle. Professor Plummer is Director of the Sir Bobby Robson Cancer Trials Research Centre and leads the Newcastle Experimental Cancer Medicine Centre so who better to answer my first question: what is a clinical trial?
A clinical trial in general is, I guess, an experiment in humans you’re testing ‘does a new treatment work?’ So, the very traditional randomised clinical trials, you test a new treatment against a standard of care. But the sort of early phase trials we do, there isn’t a standard of care, so we are just using the new drug on its own.
You’re trying to prove that it’s safe. And to get a sign that it might work as you hoped it does or how the science told you the new drug or the new treatment is going to work, you need to check whether that really happens in humans. And you’re also trying to work out what the side effects mean, and what side effects might be.
And when we talk about a clinical trial, we talk about what phase the trial was. Can you explain what the difference is between those phases?
In any area of medicine, a phase one study is trying to work out the right dose to give and looking at the side effects. And in every other area of medicine, those sorts of studies are done in healthy volunteers.
But cancer is different because of what we want to do. In our cancer patients, we’ve got a human cell that’s gone wrong, and you want to kill that.
So, we’re designing drugs that are designed to kill human cells that have gone wrong, but inside a human. And for that reason, traditionally, cancer medicine has never done healthy volunteer studies, we’ve always asked our patients if they’d be prepared to participate even in those early trials. So those are phase one trials. That’s the safety and the toxicity studies.
A phase two trial is usually your first signal that a drug is effective in any area. So then it’s usually one or two doses, one particular group of patients or tumour type. So that’s a phase two. And if something looks promising at phase two, you would go to phase three, which are the randomised control trials against a standard of care at that point in the patient’s journey.
So, because the different phases of trials are looking at different elements of a treatment, are there differences in how trials of each phase are designed?
I guess there are similarities and differences as in many things, it depends how it’s going to work. Anybody designing a trial would look at the preclinical science. And to design a trial, you need to think there’s practical things like dosing. So you can have an idea from animal pharmacology, how often you might need to dose but you need to do pharmacology in humans because they may well handle the drug completely differently.
So you need to design that. But you also need to have an idea how often you give the drug. So is it every day, which can be done with tablets not realistic if it’s an intravenous drug, is it once a week once every three weeks? I use a drug routinely in my NHS practice where we only give it once every six weeks because it hangs around.
But what’s really important nowadays when you’re designing a trial is to think carefully about the patient population. Back when I started doing this, and we really only had chemotherapy type drugs, you would genuinely have all comers, it doesn’t matter what sort of tumour, somebody who’s interested in the trial we could put them on. But nowadays, when we’ve got drugs that might be targeting a particular mutation, or a particular element of a tumour, it doesn’t make sense to offer that to all comers, because you’re putting some patients at risk of side effects with virtually no chance of a response.
So we tend also to focus very much on designing trials on the how we’ll identify and stratify the right patients. But also, what key biomarkers can you do to prove the drug does what it says on the tin? If you think you’re going to block a particular enzyme, how could you do what could you ask patients because they’ll often gift a lot of samples to the researchers to be able to do this. In a blood sample, you can measure the levels. But could you also measure the something going up or something going down and check the drug is doing what you hope it does. So you need to design all of that in.
And then you want with the sorts of studies we do where you’re trying to work out the safe dose, you start low ish, but you hope not too low so nobody’s got a chance of getting enough drug to benefit. And then you need to work out how do you safely and most efficiently go up. So you give us few patients as possible lower doses that may not work and get quickly get into a range that we call an efficacious range.
So there’s all those elements, so you have to know quite a lot about your drug, and accept what you don’t know as well how it’s handled, and then building all these elements, and then make it sensible and reasonable for patients. My Clinical Pharmacology colleagues doing blood tests to look at drug levels, would love to have a huge number of samples, but nobody wants their blood taken in the middle of the night. So, you’ve also got to make it practical for the patients and not ask too much.
That’s a lot to consider for each trial, so how many people are involved in them?
You’ve got sort of two stages because you’ve got the unit I run here, which is one of the CRUK’s experimental cancer medicine centres and a CRUK Centre for doing this sort of trial and the clinical pharmacology associated with it. But we deliver trials so we see patients and treat them. But absolutely key is to have a sponsor, who’s taking overall legal responsibility and CDD, Centre for Drug Development, at CRUK will sponsor and run trials. So there’s that management function. And sometimes that can be within one of the CRUK funded clinical trials units and those CTUs don’t see patients. So it’s slightly complicated because the nomenclature is very similar, but CTUs do not see patients.
I’m a clinical trials unit in a different sense. We call ourselves a facility to try and separate the two because we do see patients. So at the beginning of setting up a trial, you need a sponsor and a CTU and you need the statisticians. You need people to write and proofread the protocol and to talk to the regulatory bodies in the UK, for us, that would be the MHRA.
But also in terms of safe conduct of the trial, the CTU plays a key role. So it has data, it’s all anonymized data by that point, but they’d be from all of the clinical sites pulling together all the data.
So they need data managers, as well project managers. And then each of depending on how many clinical sites you need, the Bobby Robson unit here, where we see patients, and we have a receptionist, you’ve got research nurses, we’ve got clinical trials assistants who help with bloods and various other tasks, we’ve got a couple of lab technicians for processing all these complex samples that are going off to be measured. And then in the back office, we’ve got the staff who type up letters, but we’ve got data managers and clinical trials coordinators. And we also because we’re a CRUK centre, have a project team for some of the more translational research. So, we’re a team of about 40-odd on the Bobby Robson unit.
And with a team that size, how many trials are you able to work on at one time?
It’s quite a lot, so partly because in early phase, you would treat a small group of patients and then you follow them for a few weeks to check it safe before you treat the next group. So, it can be a bit stop start. And we see about 400 plus referrals a year for early phase trials and have a waiting list of patients from the northeast of England who want to go on a study, know what the score is for them and say they would like to help, and they would like to try a trial.
So, we have usually 30 plus open and recruiting studies. And we usually have a few more in follow up. And if you go on an early phase trial, and you do well as a patient, the agreement has always been that unless there’s a safety reason to stop, you can keep having the drug even if the trial finishes. So we have a few trials that are just held open, in some cases for years, because somebody’s done really well, the drug suits them, it’s controlling their cancer, and they will stay on it. So we have a few of those as well. So it ends up being about 50-ish trials open, but usually 30 in active recruitment.
If from one of those phase 1 trials an agent does look promising, does your team continue that on to phase 2 studies or do you have to pass it on to someone else and keep your fingers crossed?
Well, we always like to keep going. So we do phase one, and some phase two studies. But pretty much the only phase two studies are the ones with our babies as in, you know, like rucaparib erdafitinib, the drugs that have come through from the Newcastle drug discovery team, we would say yes to a phase two study in those agents.
It’s always nice to keep track, but we don’t have to, we do in Newcastle have a parallel late phase trials team. So the phase three studies would go through there, we wouldn’t do because we’re a dedicated early phase trials unit. We only do experimental trials.
One of the drugs Professor Plummer just mentioned was rucaparib. Rucaparib is an oral drug primarily used to treat certain types of ovarian cancer. It’s type of drug called a PARP inhibitor, which work by stopping cancer cells from repairing damage to their DNA.
The Centre for Drug Development at Cancer Research UK sponsored the first trials of rucaparib in the early 2000s. And in 2003, Professor Plummer was the first person in the world to write a prescription for a PARP inhibitor.
When we spoke, I asked her what it was like to be involved in the trials of a drug that would go on to become such a widely used treatment.
It was exciting. I think there was a slight degree of trepidation because when rucaparib went into the clinic, it was two years before olaparib, the second PARP inhibitor into the clinic. So no cancer patient had had a PARP inhibitor. And so it was it was four CRUK sites that open cause CRUK sponsored and ran the first trial.
And the others said, well Newcastle can do the first three patients if they like because nobody really knew. So certainly myself and Hilary Calvert, who was a professor at the time, were around on the trials unit just to support the nurses. And the patients knew they were the first in the world.
The science advanced, we’d been in the clinic two years, and then the story and the real power of using PARP inhibitors in the DNA repair deficient cancers in particular BRCA1 came out. And I went back to CRUK and said, “Can we do a second trial? We’ve had a good idea. We think this will work”. So you adapt to the science and the drugs then went off in a completely different direction to what we started. So you can’t have a closed mind. Good research is team science. And it’s listening to others not just thinking I’m right, and this is the path I’m on, you’ve got to be prepared to adapt. So we did adapt.
And yeah, it was great. And it was interesting to see the ups and downs and that path to licencing. And, although it felt long, talking to colleagues in industry, it wasn’t, they were looking at similar timelines from going into the clinic was it 2003 and a licence 13 years later, that was considered pretty good, with a first and a new molecule in class, nowadays, that would probably be a bit disappointing. But I think what’s changed is, is the underpinning power of the understanding of cancer biology that’s advanced, and our ability, much more inexpensively, and therefore more widely to profile the tumours and to understand it tends to be focused on the DNA and the genetics, because we can do it, but I’m sure it’s coming with the proteome and the other things, and then select patients for trials. So I think we would have done very different trials, if we’d started now, and we’d have known different science, and we’d have designed a different trial. But I guess that it’s important that the world doesn’t stand still.
Although we wish that every drug could be a success story, it’s important to recognise that not all of them will be. For every rucaparib, there might be 100 drugs that fail in clinical trials. And while that might sound disheartening, a clinical trial is just that, a trial. We won’t know which treatments could become the next standard of care until we test them. But that doesn’t mean that the trials that don’t produce positive results aren’t useful, in fact, knowing what doesn’t work is just as important as knowing what does.
It’s important to do trials. And I remember saying this at a grant review committee, when people were saying, Well, you know, if you’re trying to assess a funding project, and you look at the number of trials that were successful, and I said, it would be a bit of a worry if 100% trials were successful, because you probably shouldn’t have been asking the research question.
There needs to be an important research question. And you won’t always be right. And patients when we talk to them do understand that there’s a lot of unknowns. But if something’s so obvious, then we should be doing it clinically. We shouldn’t be doing a trial. So it’s not important to have the failures, but there will be trials that aren’t successful because not everything is right. Not every hypothesis is proven. And that’s what you should be doing with the trial is looking at a hypothesis.
The other thing that there’s a big push towards and it is absolutely right, is that those negative trials must be published. But it is very difficult to get negative trials published because the journals want to publish the exciting positive results not: ‘This didn’t work’. But it’s really important to get published to stop somebody else doing it as well. If it seemed a reasonable hypothesis, and a reasonable thing to test, you need to know if it doesn’t work, and not do it again. It should be inevitable there will be some negative trials.
Now we’ve heard about what clinical trials are and how they’re designed, let’s move onto the next step of the process: running trials and recruiting patients. To tell me about that, I spoke to Karen Turner, one of our Senior Research Nurses.
In addition to funding clinical trials, we also fund 15 Senior Research Nurses across the UK, who facilitate the delivery of high-quality clinical trials. They’re experts in the delivery of clinical cancer research, and act as a key interface between researchers, health professionals and people affected by cancer.
And Karen is one of them, leading a team of early phase research nurses at the University of Birmingham. I spoke to her about her role in delivering clinical trials, and how trials have changed over the years.
So Cancer Research UK, wanted to bridge the gap between their amazing science and research and actually what happens in clinic with a patient. So, this team of nurses grew around that that desire. And it’s anything that will translate to the public about the incredible work about the clinical trials and about the developments. But then I also have responsibilities within the university and I do a bit of how we involve patients, parents, carers, in the development of research and the management of research, and also working with a team of really talented skilled research nurses on developing a programme of early phase clinical trials.
So, you work on early phase trials, and Professor Plummer explained that these trials are mainly about testing the safety of a new agent. Can you give me a bit more detail about how that works and your role in those trials?
So, we’ve got a new treatment, a new initiative, what are the side effects people are going to find to have? And how safe is that? And really, what’s their experience? What dosage can we go through? So, we have something called dose finding trials, which is where you will give three patients the same dose, if everything is safe, you’d move up to the next dose. And that carries on until you find side effects that are particularly problematic for the patient, or are problematic with the blood chemistry we’re seeing. And then you would say that’s the maximum tolerated dose, We’re just looking at what works. What does it do to people? What does it do to their heart? What does it do to that other organs?
And I always think early phase research nurses are very much like little Inspector Cluedo because they’re trying to find out, you know, is everything okay? And making sure everything gets reported by the patient. So they can quite often forget, ‘yes, I do get more nosebleeds more headaches’, more more things that they wouldn’t have normally had could be the new drug we’ve given them. So we collect a lot of information. And for that reason, you don’t tend to have many patients on those early phase trials, they tend to be a lower number. And it tends to be patients who have gone through all the treatments, because if we’re looking at whether something is just safe, clearly, we’re not looking at how effective it is.
So, for some of these people, the patients that come to us, they’re the greatest unsung heroes really because they’ve gone through a lot of treatment. And they’re at the point where we’re going to look after their symptoms and work with community people to make sure they have the palliative care the palliation they need but they come back to us and say we’ll help you with your research. What can we do and they put themselves through a lot more tests a lot more investigations and treatment in there hope it might help them, but it might help other people. And it certainly helps us understand a lot more about the disease.
That sounds like a lot for nurses to juggle, and on top of that you’ve got to keep up with all the advances in clinical research. What are some of the biggest changes you’ve seen in clinical trials in the time you’ve worked on them?
The changes are coming thick and fast now. I think probably about 20 years ago, we used to have what we would call a catch-all clinic. So, this would be anybody who’s failed their standard treatment options. And those doctors may have no other treatments to offer patients. But we might have a clinical trial that’s looking for people with a cancer and we’re looking to see can we stop the blood flow around a tumour.
And for that reason, we will take a number of different diseases. And I remember, we would have somebody with breast cancer, somebody with colon cancer, somebody with different types of prostate cancer, and it was a catch all. So, we would bring people in, we were looking at the safety, but also then, in the next phase, phase two, which is in slightly more patients, you’re looking at how effective things are in that different area.
And from those early trials, we developed things like Avastin, which we know works with a certain type of cancer and Herceptin, which works with breast cancer. So those catch-alls were really good at learning more about what cancers to target and what we were looking at with that drug. But it wasn’t great for everybody. So, we would recruit about 10 to 15 patients, knowing that we would only hit two or three that really had the targets. As science has progressed and as we’ve learned so much more, we’ve now become more targeted, or what I’d call personalised medicine. And it’s about getting the right treatment to the right patient at the right time.
And the best example we’ve had in Birmingham is the National Lung Matrix Trial that Cancer Research UK funded. And the idea of this was not to do the catch all situation, but turn it on its head. So take a patient, and in this case, it was with lung cancer, and find out what is specifically driving that cancer. If we can find the protein or the marker or the fault, have we got a drug that targets that fault. And so then we would take that patient and we place them in the right treatment arm. So the world or research that I’ve worked in has turned on its head.
But the other big change is you can have a clinical trial, but it could be up to eight arms open. So, you’re recruiting and you’re testing patients to go into one of those eight arms. But each of those arms have their own safety protocols, their own procedures, their own journey, we take patients on and so, so complex, but it’s the right thing to do for the right patient. And I think that’s something that Cancer Research UK were world class at leading on that role.
This really is about putting patients at the centre and saying can we not test the patient and then find the right trial for them. Personalised medicine has been the biggest change, the biggest challenge, but it’s also had the biggest benefit to patients and their families. And I think that’s why we balance it as a team because when you see somebody who’s been told, they might only have six months left to live, and they find their way to our clinic. They get a targeted treatment and you know, six years on, they walked their daughter down the aisle this summer for the wedding, you know, that puts things into perspective.
With the introduction of personalised medicine into clinical trials, how has that changed how you recruit patients? If you’re only looking for one specific mutation in one cancer type, it sounds like a lot of people may have that cancer type, but not the right mutation. How to you navigate explaining that to patients who want to be on a trial, but aren’t eligible?
Yeah, it starts with the very first contact you have with people. And it’s about being honest, open. And just managing those expectations. Some people might have found us through the internet and heard about a trial and come to see the doctors and the professor. And it’s a case of yes, we do have this, but your cancer has to be exhibiting this protein for the drug to attach to.
So before, we would never have had to go into such depth on how the treatment would work. That’s very complex, when you’re trying to recruit patients, because you can go through everything, explain everything, and they can get quite keen on going into that trial. And you get the results back and they don’t have that mutation, they don’t have that fault in their cancer, they don’t have the target that you need. So the drug actually won’t do anything.
But it’s important we keep those results because we might retest and find the cancers evolved and what wasn’t a target before may be a target now.
And it does make it a bit more complex. It’s no longer just going down a clinic list and looking for people with breast cancer. ‘They haven’t had radiotherapy oh we’ll have them’. It’s really about talking through your teams, your medical team, your pathology team. And it’s become a very holistic approach putting the patient at the centre.
And we’ve got better at finding out if treatments are working sooner. So previously, when I talked about 20 years ago, we’d have a catch all clinic, we would scan patients with a CT scan or MRI, and we would see we would measure the size of the cancer or size of the tumour. And sometimes we’d say, oh, it’s not changed, you know, there’s been no effect and we could take patients off that treatment and look at other treatments. Now we have things like PET scanning that measure activity in cells, so they don’t just do a very blanket scan to show it is this size. They actually look at what activity there is so the cancer might not have changed in size, but you can tell there’s lots of activity, and a lot of cells are being killed and dying off. So you know, you’re on the right treatment.
And it’s been a huge area of development. And we’ve really embraced that in clinical trials and try to lead the way, and then help the NHS understand what’s coming next.
So, recruiting patients takes longer than it used to, but that’s a positive because it can spare people the side effects from treatment we know won’t be effective for them. Are there any other important considerations when it comes to recruiting patients to clinical trials?
Yeah, we, it’s really looking at how treatments work and the treatments, we’re now using the individualised targeted treatments work on a patient’s DNA and the cancer’s DNA. And we’re now understanding it’s so vitally important, we have that diversity. Because across those diverse communities, there might be different DNA markers, different DNA changes that we’re not aware of.
So if you test a drug in just one area, and one biological community, it may have no relevance to another community. So we’re really understanding now and we’ve got examples of how things can affect DNA in different ethnic groups. And that’s really important. And talking to a lady I met through some of the work we’ve been doing. Afro Caribbean lady that had been given a drug that made her skin change and go a much lighter shade, and it made her hair grow back really straight. And it was all these things she’d never, never thought would happen, but had a massive impact on her. And it wasn’t just on her cancer, but on the side effects. And we didn’t know it was going to be something to happen to warn them. So the more information we’ve got, the more we’ll know, what’s the specific needs of a diverse community? But also how’s things going to affect them? Can we warn people can we let them know? It’s working with patients to give them all the information they need. And then that’s really, really important, we do that. And it’s really trying to work with communities to understand what we’re doing, and have that conversation with them about
What can we do to help them understand? And it’s not just making sure things are available in different languages. It’s about helping people understand having those conversations with different communities.
I know that alongside your clinical work, a big part of your role is being an advocate for patients taking part in trials. What does that involve?
Yeah, really being the advocate for those with cancer and their families. Cancer research nurses are so unique. We’ve all had a great wealth of experience working on the wards in clinics, and we can share information that you know, patients do find out Travelling to hospitals and car parking a problem, you know, to a professor and a scientist that developing a treatment, they might think, why is that relevant? But if it’s going to stop people going into a trial, we have to be the advocates to say, could you not reduce the visits, you know, if somebody’s coming in, can we get as much information on that day, because actually, they might need to get carers in, they might need support.
We also try to get patients, carers, members of the public involved in the research because it’s no longer about doing research to people or for them, is actually doing it with them. So asking patients to come on board, finding out what the important questions are to them. And looking at things like quality of life is really valuable, not just how much longer a drug can give somebody, if we were to develop a treatment that could extend life by six months, but you’re going to be in bed and have awful stomach cramps and be anaemic. It’s, it’s balancing that up and it’s having that advocate role of a patient and the carer, or the parent of a child with cancer to say, this is the important thing.
And they can be really very important in designing something that is fit for purpose that will go into the clinical space and actually be practical and actually have an impact. And that’s what we want. Yeah, being an advocate is very important to me.
So there are a lot of different elements to your role you and the team must be so busy, but it sounds like it’s a really rewarding role at the same time.
I’ve worked with cancer patients since I was about 20. I’m a bit older than that now. And they’ve really shaped my life. And it’s been a total privilege to work with patients with cancer in because you’re having to look at the whole person.
That’s what I enjoy the most is that interaction. My role at the moment we Cancer Research UK gives me unique access to meet people who are invited to events, it might be to leave a gift in their will. So, a legacy event and you’re meeting people that have had cancer 10, 15 years ago. So, they no longer have any interactions with cancer teams in hospitals. And they’ve got really valid questions for somebody that’s out of treatment that long, and they want to know about the changes and they’ve got so many things they want to pass on and share.
That’s been something I really value, and you just never know when you go out in the public. With your Cancer Research UK t-shirt, you never know what you’re going to get asked and it could be something that really changes somebody’s mindset, and they pass that on. So you just never know what those ripples will be. But I love every day you’re aware that you’re making a little ripple somewhere and you just don’t know where it’s gonna end up and yeah, I love it.
So far, we’ve heard how a research team will design a clinical trial, and research nurses like Karen will facilitate them in the clinic. But there’s one last perspective we’re still missing, the people at the centre of every trial, patients.
So, to get that perspective, I had a chat with Peter.
Peter was diagnosed with prostate cancer in 2009. After his diagnosis, he met with Professor Nick James, and was given the option of surgery, or hormone therapy followed by radiotherapy for his treatment.
After opting for the latter, he was one of over 3000 men who took part in the Cancer Research UK-funded CHHiP trial. CHHiP was a phase 3 trial that wanted to find out whether giving people with prostate cancer radiotherapy in fewer, higher doses is just as effective as more, lower doses.
CHHiP showed that giving higher doses of radiotherapy over 20 days was just as effective as the standard of care at the time, which was lower dose radiotherapy over 37 days, without causing additional side effects.
I asked Peter about his decision to join a clinical trial and what taking part in CHHiP was like for him.
I can’t remember whether it was Nick, or whether it was the prostate cancer specialist nurse who said, ‘We have a trial’. I think it was Nick and the prostate cancer specialist nurse. ‘We have a trial coming up. The current treatment for prostate cancer radiotherapy is 37 days, you would come here to the QE every weekday for 37 days. That’s the standard treatment. The trial is comparing the results of that treatment with 20 days or 19 days. Would you like to go on the trial?’
I discussed it with my wife, I think it took about five seconds. And ‘yeah, we’ll go on the trial’, right. He said a computer will now do the necessary bits and pieces. And we’ll throw out whether you’re 37, 20 or 19 days. I copped for the 19 days, which was brilliant because that’s half the number of days, we had to drive from my house in Worcestershire to the QE Hospital in Birmingham, which is something like 25 miles away and a fairly busy route. So I started the radiotherapy in November.
On the first day. My wife drove me. And radiotherapy treatment starts with drinking three pints of water. And then you do have the radiotherapy treatment, which is very short period of time. You’re part of a queue, of course, the biggest problem being if they’re running slightly late, and you’ve drunk three pints of water and you can’t hold that back. You then have to go for a pee and all of a sudden you’re at the back of the queue again. So that was always a ‘please, I hope the queues moving quickly. Here I go with my three pints.’
During my actual treatment, we joked about everything we maintained that humorous approach to the treatment, that that seemed to pervade the radiotherapy department at the QE, Queen Elizabeth Hospital in Birmingham. It was a very positive place to be. Met some lovely people.
I did Thursday, Friday, then I had the weekend off, then the next five days were fine. Not a problem, and it got to the weekend. And on Sunday, I was due to go to a concert, in which my wife was playing at which point, the side effects of the radiotherapy kicked in.
After a period of time, of course, I finished my treatment. And that was that. Finished my treatment in time for Christmas. I think my treatments started on November the ninth. So by the time Christmas came along, a lot of the side effects had gone.
So once the treatment part of your trial was finished, what happened next?
From then on, I was monitored. My PSA was taken every three months, I think, it had dropped from whatever it was initially, I think to about 0.7. And then over the next two or three months, it seemed to come down to about 0.4. And it’s and it’s hovered around 0.3/0.4 ever since. And since we’re now talking in the year of our Lord 2023, I think we can say it’s been quite successful, in fact, very successful is that 14 years now.
So, in terms of the trial, it was a face-to-face report back probably every three months for the first year. Then it became a phone call every six months, then a phone call once a year. And I think this is the first year that I haven’t had the phone call.
Peter took part in the CHHiP trial in 2009, but his connection with Cancer Research UK goes back much further. He’s been a member of a committee raising funds for the charity since the late 1980s. Now chair of that committee, they’ve raised almost a million pounds for life-saving research to date.
In 2014, Peter’s paths as a fundraiser and a trial participant crossed, and he was able to really see what the money his committee had raised was going towards.
During that time, I suppose because of my fundraising link with the charity. We were invited to meet Dr David Dearnaley, who was the the architect of the trial, and we went to the Royal Marsden Hospital in Surrey.
When I went to see him, he was saying the trial looks pretty positive. In terms of the fact that we can feel we can reduce the number of days at the moment because they’re monitoring people like me all the time for the effectiveness of it but also for side effects. It was then that I learned that if the trial was successful, and it looked as if it was going to be successful, it had cost Cancer Research UK £750,000, which is about the amount at that stage my committee had raised.
He then said, ‘of course, you know, what this means’, and I hadn’t really thought it through, I thought it through the different number of days are reduced, then of course, in terms of my life, and anybody else’s life, only travelling 19 as opposed to 37, half the number of days, means a great deal to a patient. And then he said of course ‘look how much time it frees up in radiotherapy’. Completely free, all of a sudden, the NHS is gaining an extra he said 25% free time to treat other patients or to treat more patients.
That’s such an amazing outcome, and it couldn’t have happened without patients like you. When you look back at taking part, did it feel like you were helping to advance research at the time?
Thinking about it, yes. In some way you felt that you were at the same time as being treated, so someone was giving you something, you were contributing to the cause in itself. And I think it took if there was any edge to the treatment, any nervousness about the treatment, and strangely enough, I felt totally and utterly confident in that treatment. So, I felt not only utterly confident, but also that I was helping to contribute to something.
That there was something going on that acknowledged the fact that 37 days of journeying was formidable for anyone suffering the disease who had opted to go for radiotherapy. 19 days was tough enough I can tell you.
But the actual beam that they were giving me was significantly different from the the beam of radiotherapy that they gave those on 37 days. And also I think, since then the accuracy I think they’ve been able to pinpoint it even more accurately with modern equipment, thereby reducing the side effects on the bladder and on the bowel
And that Jacob was that really.
Now we’ve heard from Peter, we’ve come to the end of our whistle stop tour of world of clinical trials. Ultimately, we’ve only scratched the surface. Every trial is different, and every person’s experience of taking part in a trial is unique, but I hope what we’ve covered here has helped clue you up on what the words ‘clinical trial’ really mean.
Before I go, I want to say thank you to our guests, Professor Ruth Plummer, Karen Turner, and Peter.
For more information and resources on clinical trials, take a look at our show notes, or visit cancerresearchuk.org.
You can also find a directory of currently recruiting clinical trials on our website, as well as published results from previous trials. But remember, not everyone with cancer can take part in a clinical trial. Each trial will have its own eligibility criteria, and even if you meet it, it’s vital that you discuss taking part in the trial with your doctor before you enrol.
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