Pancreatic Cancer

Clinical trials for pancreatic cancer

Clinical trials are research studies involving people. They test how well particular treatments work and whether they are safe. Unless people take part in well-designed trials doctors do not have enough evidence to know if a treatment is both effective and safe. Without trials, there is a risk that people will be given treatments which do not work and which may even do harm. There may be great advantages in taking part in a clinical trial. However, just because a treatment is new and is undergoing a trial does not mean it is necessarily better than existing treatments, and it may have bad side effects. Trials are designed to answer these questions.


A consultant oncologist explains that taking part in a clinical trial may give a patient an...

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We were talking about treatment trials. What are the advantages of taking part in a treatment trial?
The most important advantage I think is for patients to be allowed to access state of the art treatment. So when treatments are relatively limited then clearly if you can access, or optimise your, give yourself the best chances of an improved quality and quantity of life, then it may well be by accessing treatment within a clinical trial.
The other issues that are slightly more subtle are that as part of being involved in a trial protocol you usually have very close access to a clinical team, the doctors and research nurses, which sometimes is beneficial. I think it gives people a certain sense of safety.

A consultant oncologist explains why some patients may not have the opportunity to take part in...

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Who is eligible for a treatment trial?
We’d like to say most patients. Because the treatment options are relatively limited, it’s great to be able to give patients access to newer treatments, state of the art treatments within the context of clinical trials. But there are certain limitations; every protocol will have certain criteria that patients need to meet. And some of these are about patient’s safety, particularly if treatments are being tested in the early stages where safety issues may not be entirely understood. 
Also, some of these trials, particularly when in the early stages, are only open in a small number of centres, and so it may not be locally available to you, although specialist teams will know what’s available in their region and elsewhere and you are always allowed, and you’re within your rights to be referred elsewhere. But then you have to think again about the practical issues of travelling and so on.

Many of the people we interviewed had taken part in a clinical trial. Some were still involved in the trial and seemed to be doing well, others had decided to leave the trial because of side effects, and some had had to leave the trial because the new treatment was no longer effective.


Lilian asked to go into a clinical trial. She is happy to be a ‘guinea pig’ and feels that a...

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Age at interview: 74
Sex: Female
Age at diagnosis: 74
And have decisions usually been made together, as husband and wife, and with the doctors, or have you let them make decisions?
Well my, it was my decision to ask to go on a trial.
And I did say to George, “It’s no good you telling me you don’t want me to do it, because I’m going to over-ride you this time. I want to do it.” And he has backed me up all the way. But in general I think we both feel that we couldn’t be treated better if we wanted to. And we, we also, and even include George as part of the team,
That’s good.
Yes they’re brilliant, you know, he sits with me while I’m having my chemotherapy and that, and they talk to him as much as they talk to me. In fact sometimes he listens more than I do.
And what convinced you that the trial, a trial would be the best way forward?
What convinced me was, I thought about my age, I thought about the life that I had had or have and I thought, “Well hang on a minute, we have nothing to lose. If it works and if only say well five or ten years from now they find something that they have learnt from people like me then it will be all worthwhile.”
I, and I just, I for some reason, I can’t explain to you why, I knew the minute she said what I had that’s what I wanted to do. And I hadn’t even really pondered about it, I just knew that I needed to do something about it in hope that somewhere along the line even if it’s ten years from now, can gain from the expertise they learn from people like I and other people that are quite happy to be guinea pigs.
But not everybody wants to be a guinea pig.
Everybody is different. Some people can’t accept it and some people can accept it as long as they’re just on treatment.
If you hadn’t been on a trial did they say what chemotherapy could do for you?
No. I didn’t even ask them.
I didn’t bother.
No, so you were convinced a trial was the best?
In fact I actually told them, “If you don’t,” and George is sitting here beside me so it’s true, I said, “If you refuse to let me go on this trial basis, I’ll tear the hospital down.”

Clinical trials are performed in a number of stages or phases. When a new treatment is first developed it is given to just a few people to get an idea how safe it is. This is a phase 1 trial. In a phase 2 trial doctors test the new drug in a larger group of people to better measure safety and to see if there are signs of positive effects in patients. Lilian was taking part in a phase 1 trial of combining gemcitabine with, a biological therapy*, a type of drug called a NOTCH inhibitor that works by decreasing the amount of a protein that some cancer cells need to grow and divide. She attends the clinic once a week for an infusion of gemcitabine and also takes 4 tablets of the drug. She has attended four times so far and has not yet had any side effects. Ann took part in a phase 1 trial which involved another type of drug called a PARP inhibitor, a biological therapy*. These drugs can block a protein which is important in DNA repair and so can prevent damaged cancer cells from repairing themselves thereby preventing further growth of the cancer. The side effects made her very ill so she decided to stop the treatment.


When her cancer came back Ann took part in a phase 1 clinical trial which assessed the safety and...

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Age at interview: 62
Sex: Female
Age at diagnosis: 62
And the other thing that’s happened since then is that there was, you know, when, when you get a recurrence you immediately think, “Is there anything I can do?” And I always thought there wasn’t anything. But in fact there was a trial of something called PARP inhibitors that are very new type of drugs that attack the genetic pathway in, for some people who have cancer. And it seemed like a good idea to try and get on one of those trials. And it took several weeks for that to happen. I went to the Marsden to see them. And this is a phase 1 clinical trial, which I was very happy to take part in. But in the event, and there were quite hassles about getting on the trial and whether I could and whether I, when it was going to start, in the event I had to take eight of these horse pills twice a day and they just made me sick. And for me, I just felt, I, I just didn’t want to go through that. I then tried, I remember going to the cinema to see Chanel and feeling quite sick all through it, and then coming out and being sick in the street and feeling, “I just don’t want this really.” And I then, it was suggested that maybe I should try just one of these pills and see if I could gradually increase the tablets. But they still made me sick despite whatever I took. 
So in the end I made the decision that I wasn’t going to do anything and just try and enjoy these last few, well, what have turned out to be months. Whereas I thought it might be weeks or days. And I don’t have any regrets about that. I do have regrets that there isn’t something I can do. But I know I’ve always felt very strongly that we often try and do things at the end of life which actually make the end of life rather unpleasant. And there are times when one just needs to say, “I can’t do any more. I’m just going to enjoy what’s left to me and try and manage the symptoms as best as I can.” And that’s, I feel like that’s, that’s not to say that I don’t, I don’t sometimes have regrets or feel cross about it, but I feel for me that’s the right thing to do.
Can you just remind me what a phase 1 trial is?
A phase 1 trial is really where they’re trying to check out the toxicity of the drug. They’re not, they know that it works in some way but they’re not absolutely sure about the effect that it will have. But some of these PARPs as they’re called have been found to prevent, well, to make some of the recurrences disappear, in prostate cancer particularly, and breast cancer, where there’s a genetic element. And they think there might be a genetic element for me.

Bob had also been involved in a phase 1 trial. He said that only four other people in the country were taking part in the trial, which included the drug Reolysin. This drug has been developed from a reovirus, a biological agent that is found almost everywhere in the environment. The virus has the distinctive ability to replicate within cancer cells and destroy them by causing them to burst open and die, but it doesn't seem to harm normal cells. Bob had a bad reaction to the combination of drugs he was having.


Bob took part in a clinical trial. This included chemotherapy and Reolysin, which is made using...

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Age at interview: 65
Sex: Male
Age at diagnosis: 62
…so you were invited to take part in a clinical trial where you had a different drug?
Yes, Reolysin, okay, which was combined with a virus, which went on for five months of going in there every day for three, for three weeks, then having a week off, and then another three weeks and a week off, going in on a daily basis.
When you say it was combined with a virus, was that injected or was it a vaccine?
It was a virus that was injected, yes. The nurses that gave you the treatment were, they have to lock the doors of the place to stop people coming into the room, and they had to be suited and booted with a mask and everything else because of the virus, etcetera.
I was told that it would be arduous, and that was an understatement. Arduous was more, it was more than arduous. It was, my nails all come out, my finger nails, all went poison. My hair come out, I remember driving along and opening the car window and my hair done a, all come in a whirlpool and went out the window. All in like all in, after one of the treatments, and I thought, “Oh that’s great.” But my finger nails all went poison. 
What do you mean, went poison?
They went, they just went black and poison, and pus appeared underneath the fingernails. So I had to have those cut off. Then I had, the poison went up my arms, okay, so I had to go back into hospital and have those, have my finger nails removed, from a plastic surgeon. Feeling very, very sick, and this went on for about five months, of that, and it was just the last bit of the treatment and they just couldn’t do the last month of it. 
I had an, I had a bad episode during the chemotherapy, the trial, where the integrity of the veins collapsed in my tummy and they started to bleed. And this was another part of the side effects of it, and I had internal bleeding, which was scary because I lost quite a lot of blood.
Which trial was that?
This was, this was the, this was the trial with the virus, the one that’s every day for three weeks, and then a weeks break. That that scared me and I’ve not been scared all the time on that, I’m quite philosophical about what I’ve got etcetera okay. 
But that scared me because it seemed quite imminent, imminent that something had gone wrong, because my blood pressure dropped and at first I’d seen one doctor by my bed, then two, and then I remember, what’s the name, there was four. And, and then, and then the Professor that was looking after us trying to get a tube into my veins to give me some blood, okay. And then I got the feeling, “Ah something’s really quite wrong here, you know.” And it was because of the internal, internal bleeding into, into my tummy. 

Phase 3 trials are large, and may include hundreds or even thousands of patients. They aim to compare the effects of newer drugs or treatments with the standard treatment if there is one. They provide a better test of whether new treatments work better than existing treatments, and firmer evidence about how common and serious any side effects are. Almost all Phase 3 trials are randomised controlled trials (RCTs) because the doctor wants to know whether the new treatment is any better than the standard treatment. This means that people are allocated at random to one of the groups in the trial, often by using a computer programme. In an RCT, one group of people, the experimental group, is given the new treatment. The other group, called the control group, is given the standard treatment. This approach ensures the patients and doctors do not know who has which drug and so avoid any bias when interpreting the results. Some trials may compare more than two groups.

The European Study Group for Pancreatic Cancer (ESPAC) has been running a number of these trials to see if it is useful to give people adjuvant chemotherapy after surgery. In the trial (ESPAC 4) some people were having gemcitabine after surgery, while others were having gemcitabine plus capecitabine, to see which treatment has the better outcome.


After surgery Helen took part in a randomised controlled trial called the ESPAC trial. The...

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Age at interview: 49
Sex: Female
Age at diagnosis: 47
What was the trial called?
It was ESPAC.
How do you spell that?
E S P A C.
Do you want to summarise what the trial is all about?
Basically they don’t know which chemotherapy works better on my cancer, my type of cancer, or pancreatic cancer in general actually. So they, they are, they do have chemotherapy trials at the moment where they’re trying to, they have people, different people on the trial, those who already have pancreatic cancer or those like me who have had the Whipple’s operation and are cancer free and therefore want to prevent cancer recurring. They, they split it into, was it two categories or three? And you, you, it’s randomised basically. They, they put all your details into the computer and the computer selects which part of the trial you will be put on. And I was told that I would either be selected for no chemo at all or this one particular chemo, which, there were two different chemo modes that you could be selected for. 
At the time I kind of, because of everything I’d been through I wasn’t really in a rush to go and put myself forward for this. But I knew that I had to give myself every chance to survive. So I agreed to go on the trial. And part of me, a big part of me actually, hoped I was going to get the no chemo arm [laugh]. Which was really daft, but I think it was, I’d had enough. I just couldn’t bear the thought of more needles, more treatment. So it was, it was really, really hard to, to do that. I was only just recovering from the operation and I, I just felt that I wasn’t ready really to, to go and do this. But everyone reassured me, you know, that it would be fine. And so I was put forward for it. They randomised it, and I was selected for the chemo. And apparently the chemo trial co-ordinator and the Macmillan nurse were taking bets before I went to the hospital how I would react [laugh]. And one of them correctly, guessed correctly that I would be a bit, you know, “Oh, no.” Which I was. But at the same time I was happy really because I knew that this was a good thing to do. I had, I wanted to be sure that, you know, I’d done everything possible. I didn’t want to live to regret not having had the chemotherapy. So I went into it willingly in the end.
What were the names of the, what were the names of the drugs?
I was on gemcitabine chemo.
Just gemcitabine?
Just gemcitabine, yes. There was, the three arms were no chemo, gemcitabine was the second arm, and the third arm was gemcitabine and capecitabine. So I got the one. Which I was quite relieved about really because it was a bit less intense than the gemcitabine and capecitabine would have been.
And when did you start that?
Almost immediately really. Within, within a couple of weeks they’d started it. And it was six months’ treatment.

The ESPAC are also looking at using chemotherapy or chemoradiotherapy before surgery (ESPC-5F study).

Many of the people we interviewed had taken part in a phase 3 trial called the 'TeloVac' trial which has since finished. It compared what happened to people having standard chemotherapy with people having chemotherapy and a telomerase vaccine. Immune system cells search for and kill abnormal cells. But they don’t always recognise cancer cells as being abnormal. Vaccines work by teaching immune cells to recognise certain proteins made by cancer cells, in this case the telomerase enzyme, which is more prevalent in cancer cells than normal cells. The immune system cells can then find the pancreatic cancer cells and kill them. Unfortunately, this trial did not show that the vaccine offered any benefit compared with chemotherapy alone. So new approaches are now being explored.


After Helen’s cancer spread to her liver she started on the TeloVac trial. She was randomised to...

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Age at interview: 49
Sex: Female
Age at diagnosis: 47
So I went to see her again and she recommended another trial. Chemo again. Because again they don’t know what works on pancreatic cancer well. So this was a different trial that they were going to put me on this time. And there were again three arms to this trial.
What’s it called?
It’s called TeloVac. That’s T E L O vac. Which is the same chemotherapy as on the ESPAC trial, but the TeloVac includes a vaccine, if you’re selected for the vaccine, which they are trialling at the moment. They don’t know how well that works with the chemo. And I was put forward for that again. And I was selected to have the chemo only, not the vaccine. Which wasn’t a bad thing really, because at this stage they don’t know if the vaccine works or even if it interacts with the chemo or if it actually blocks the chemo. So in a way I was quite happy that I wasn’t getting the vaccine. Whereas the two chemos together, the results have been quite promising so far.
What are the names of those drugs?
It’s gemcitabine and capecitabine again.
So when did you start that?
I started that in May I think this year. I’ve been on it nine months, last year, sorry. I’ve been on it for nine months now.
And is that once a week or once a month?
It’s the same as last time. Once a week for three weeks, and then I have a week’s break. And that basically, I’m on that for the rest of my life basically. It, it’s quite, it’s more of a, I’ve forgotten the word now.
No, palliative. It, it’s helping to keep the tumours at bay and keep me alive basically. If I didn’t have the chemo, I’d have no chance whatsoever. It would just be a case of time. Whereas at the moment it, it’s doing really, really well. We’re very pleased. I’m actually down to two secondaries because it’s actually got rid of one of them. Whether for good, we don’t know. But there’s every chance that it has actually killed one of them off. So we’re keeping our fingers crossed it’s going to kill the other two as well.


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Richard was in the TeloVac trial. After 2 weeks chemotherapy he had only the vaccine for 18...

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Age at interview: 63
Sex: Male
Age at diagnosis: 60
So then you had the opportunity of this trial. What was it called, the trial?
This is the, TeloVac trial, where they are using a vaccine. And it’s being run by Liverpool University and Liverpool Royal Infirmary. And they have hospitals around the country who are outreach hospitals, where you can go for treatment.
So when did you start on that?
In August of 2007. I started off with two weeks of chemotherapy and then went on to the vaccine. And initially the vaccine was, there was three vaccines a week, and then it w-, s-, went down to one vaccine a week, and then down to one a month.
How was the vaccine given to you?
It was into the skin in the stomach. It had to be done very carefully and in a particular way, not too deep, not too shallow. And, but that was, that was fine. 
And how long did all that go on for?
I became the longest surviving patient, and I, I was on the vaccine for eighteen months. And it was during that time that I ran the New York marathon.
Were you having chemotherapy at the same time?
I was having this, no, I was having the vaccine. There were other arms of the, of the trial where some of the patients were having chemotherapy and the vaccine, and then some like me were just having the vaccine.
So you had some chemotherapy initially?
Two weeks, yes,
And then the vaccine?
For how long?
Well, for, for eighteen months in my case. After eighteen months the CT scan showed that the tumour was growing. So we then presumed that the vaccine wasn’t working any more. So there was no point in carrying on with it. So after then I went on to chemotherapy.
So what date are we at now?
I’ve been on chemotherapy now for a year.
So that was a different, was that a different sort of chemotherapy that you started?
No, it was the same chemotherapy that I started on initially. Yes, gemcitabine, capecitabine.
So you had some chemotherapy, then the vaccine trial that went on for eighteen months?
Yes, yes, two weeks of chemotherapy, and then, yes, the vaccine, which w-, would go on for as long as the patient was finding it useful. In my case it was eighteen months, yes.
Were there any side effects of the vaccine?
No, it was brilliant. And you turned up once a month, so it didn’t intrude into your life really at all. And, and the side effects, I don’t remember there being any side effects at all.
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Adrian was on the TeloVac trial. He had gemcitabine, capecitabine and the vaccine. He felt that...

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Age at interview: 48
Sex: Male
Age at diagnosis: 47
I started the, the chemo and along with that there was a drugs trial that was available which is called TELOVAC. It’s effectively, it’s an immune system booster and it’s just a couple of very easy injections, much, much easier to take than the chemotherapy. And it went fine. There’s, there’s three branches to the to the TELOVAC trial. I was on, on one that gave me the, the drug and the chemotherapy. 
And as I say it went fine. The chemotherapy was ok. I found, I personally found it very anxiety inducing because it was a weekly intravenous session which took, it basically took half a day at, at the hospital. But actually getting the, the drugs in was probably not much more than an hour but I’d been there parked, waited, got hooked up and so on … more or less half of the day. And there’s also an oral component which you just took at home twice a day as far as I recall, or maybe once a day. The entire treatment is called, combined is called GEMCAP, and again that’s not necessarily available except in this case because of the TELOVAC. The, the TELOVAC trial had to be an adjunct to, to the best possible practice. And the GEMCAP combined therapy was considered to be the best possible practice. If it had not been for the trial in my primary health trust, I would only have got the IV component of the chemotherapy not the oral tablet part of it. One of them’s called gemcitabine. One’s called capecitabine.
Talking of side effects, going back to your TELOVAC trial, you had the vaccine, did that give you any particular side effects? 
The TELOVAC vaccine gave no side effects at all. And the GEMCAP hardly any. So I was lucky, I guess I was just lucky. 
When you say hardly any, what were they?
Negligible, I can’t even really remember any. 
So did you get the vaccine at the same time as the chemo or afterwards?
The vaccine was done just immediately before the chemo. Very straight forward couple of little injections.
When you agreed you take part in that trial, as I understand it, which group, which arm of the trial you’re in is determined by computer randomisation. You can’t choose.
So how did you feel about the computer choosing what treatment you were going to have?
Well the fact that you, the fact that you’ve been accepted for the trial at all is, is already a bonus because especially this health trust it means you’re getting a better, better basic chemotherapy. The computer randomisation, it didn’t bother me. I mean, I can imagine that some people might end up on an arm that they weren’t happy with and, and feel let down or cheated or that it’s the sort of thing that typically happens to them, but that’s their personality, it’s just, it has to be like that for it to be a scientific trial. If it, if it, you know, if they didn’t have those protocols it wouldn’t be a scientific trial, it would just be a free handout of TELOVAC drug and no research would be forthcoming from it. So it’s the nature of the thing. If you don’t, if you don’t like the idea of a drugs trial which is going to come with those protocols then don’t do it. 

Some of those who had the vaccine had had few or no side effects, but others had quite bad side effects. Rory, for example, had been violently sick when she had the vaccine. Ben was fine at first but after nearly nine months having the vaccine he developed a skin rash. Three months later, after having more vaccine treatment he collapsed.


Ben was on the TeloVac trial for nearly twelve months. He had chemotherapy and the vaccine. He...

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Age at interview: 40
Sex: Male
Age at diagnosis: 39
So about a week later, after they operate, two weeks two three weeks after the operation the specialist trials nurse got back to me and said, “You’re being put onto trial arm three.” Which was the top, I don’t know if you can call it a top, the most extensive treatment.
With the vaccine.
With the vaccine, yes. So that went that was going well and then I think it was, I’ve got a feeling, no, I think it was just around December I started off with a slight allergic reaction to it, but they weren’t overly concerned about it, to these two injections. So they kept it up to go and then it started gradually getting worse again so they started putting piriton, they put the piriton through the drip.
Piriton, yes, to try and bypass these hives that were happening.
You were having some sort of skin reaction.
Yes. ...I think it was March when, either March or towards the beginning of April, I had these injections and you had to wait an hour to, you can you can go and come back sort of thing but you needed to wait an hour for them to check the site to see what it was like, to see if there was any bad reactions to it. So I went to the, I went to get a coffee.
And I came back up to the clinic. As I was walking back up to the clinic I had to go up these stairs because it was outside, obviously, and I went to, I nearly fell down the stairs. I just started feeling strange, sweaty.
Very strange but I managed to make it up to the clinic. Spoke to the receptionist and said, “I’m back to see the nurse.” And she said, “Okay. Just take a seat.” But then she said to me, “How are you doing anyway?” I said. I got back up to speak to her. I said, “I’m doing fine. We’re going great.” And then felt like I tumbled, just sort of collapsing and my breathing went laboured. I felt very dizzy so slowly walked down to where this nurse was, who I was supposed to see, and she took hold of my paper work, took me into see the doctor and then I was put onto a bed and was given injections, steroids, obviously, to combat this reaction that I was having, oxygen and bloods taken. I think I ended up staying in the side of the clinic on this bed for another three hours until just everything went down because it was quite scary, scary. Literally, everything was just like it was shutting down.
Did they think that was a side effect of the vaccine.
It was a side effect.
Or the chemotherapy?
This was, they think it was the side effects of the vaccine because, obviously, they need to build them up.
But they didn’t expect it to go to the extent.
How many months had you been having it then?
Oh, nearly twelve months.

David (Interview 09) took part in a phase 3 trial that included a drug called erlotinib. This is a biological therapy* called a tyrosine kinase inhibitor. Tyrosine kinases are proteins that cells use to signal to each other to grow. Erlotinib blocks tyrosine kinase within cells from sending growth signals, so the cancer cells don’t grow (a growth factor inhibitor).


After the cancer recurred, David took part in a trial that involved the drugs gemcitabine,...

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Age at interview: 45
Sex: Male
Age at diagnosis: 38
It recurred the first time in 2006 didn’t it?
Yeah, I had the first symptoms presented in December 2006. Went to see the specialist hospital, or then spent almost a year trying to get it sorted out. So I spent 2007/2008 eventually, after the PET scan. I think it was about early 2008 then basically I was offered a medical trial which involved gemcitabine and capecitabine, Erlotinib and a further other drug. Two were blood drugs; two were the regular chemo drugs on the medical trial. The chemo drugs doing the regular thing, and the other drugs dealing with the supply of blood to the tumours. And it was hard,
What were those other drugs called?
One was Erlotinib, and I can’t remember what the, I can’t remember the fourth drug that I took, but there were two trials, in, in the medical trial. I just can’t recall the other name. So I agreed to that. And I went on their trial I think spring 2008, a six month trial. Went on it with the view that after that I’d do chemoradiation, after the chemo, after the medical trial.
Went into that, that was a lot harder the second time doing chemotherapy. Went through the first trial, or the first cycle okay. Second cycle, that’s it finished. I had a major bleed. Basically started to pass blood in my, in, when I went to the toilet, and as a result of that presented myself at A&E. 
And in the A&E was admitted to the ward, again, eventually got through, I think we went to the hospital about 10 o’clock, got to the ward in the early hours, about, very early, about six in the morning. Basically I said I didn’t feel good, needed to go to the toilet. Went to the toilet had a major bleed in the toilet, collapsed inside the toilet and fortunately rang the emergency bell in the toilet and I had a major bleed in the toilet.

Other small trials are now being done to assess the role of imaging. Some include Positron Emission Tomography (PET scans) to see how well conventional chemotherapy is working for people with advanced cancer of the pancreas. This type of scan can show how the body is working, as well as what organs look like. It scans the whole body. With a PET scan people first have an injection of a very small amount of a radioactive drug (tracer). Then people rest for about an hour. This allows the radioactive tracer to spread through the body. The scan produces an image of the radioactive tracer in the body.


A consultant explains that there are other trials taking place including trials involving PET...

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Do you want to talk about any other clinical trials that are taking place in the UK at the moment? Are there any others?
So there are a number of different treatments around being tested, in different stages of development. We have an interest in imaging of pancreatic cancer, which is notoriously difficult, and there’s a new imaging technique called PET CT, which may help to identify tumours at an early stage, and response to treatment early. And so some centres in the UK are involved in a trial where they are receiving conventional chemotherapy, but also having their tumours assessed by PET scanning, which is not the norm, because normally one would use CT scanning.
Are there any other clinical trials? 
Yes. Yes so they’re, so you will find that across the country there are a variety of different new drugs being tested, either separate to, or in addition to chemotherapy. Again as I was mentioning, as we learn more about the molecular biology of cancer, then new molecularly targeted treatments are being developed and tested, either on their own, or in association with conventional chemotherapy. So you might hear things like notch inhibitor, or hedgehog inhibitor, or an angiogenesis inhibitor, these are all different classes of agents that are currently being tested for pancreatic cancer.

Lilian has had two PET scans. She was alone in the room with a big machine, but she did not find...

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Age at interview: 74
Sex: Female
Age at diagnosis: 74
Right a PET scan is when you are taken into a certain part of the hospital that is radioactive. Certain nurses and doctors are in there. They first of all inject you with a form, I assume it’s a form of radioactive liquid or something, and then you are left in a room very quietly and they, they will turn the lights off for you if you want to have a little sleep, because you’re in there for about nearly an hour. Then you are taken into this room, it’s a large room with the scanner in it. They prepare you for it, but lying you down and making sure you are comfortable. Then everyone goes out of the room, including the people that monitor it. And then they will say, “You,” and they can speak to you from behind these glass windows, and you can hear them. And I assume that when you speak back they can hear you. And they will say to you, “Right we’re going to start now Mrs whatever,” and you, you go under in phases, it stops and starts and stops and starts. They ask you to breathe in, and then to breathe out for certain times. And it, you could have seen something spinning around which I assume is a camera, you don’t know, you just assume all this.
They can take a while, going back and forth, back and forth. And they constantly are in touch with you saying, “Are you alright, are you comfortable?” and that. Which you are. Its, it is not, it was not daunting for me and it was not claustrophobic. You are, you are, I would like to emphasise you are not locked in, or going right through a great big tube where you, where you really, your whole body is under it together. You go in phases, where they back and forth, back and forth, depending I suppose where they’re looking. And this goes on for a while, and then they just say, “Right, that’s it.”
I did ask, “Did people get claustrophobic?”, and they said, “There are the odd person”. I did not feel it. But I could fully understand why you could be claustrophobic because there isn’t anyone in this big room, except you and this machine.
And then they do ask you afterwards if you’re going to go the restaurant, and if there’s a child sitting near you would you not sit near the child because, only for a short while not very long, you’re still radioactive. And they ask you to be cautious towards the child. But it doesn’t last very long, about half an hour. But there is no discomfort. No injections, you just, you have to be stripped off obviously, and no metal. And I did not find it difficult, but yes I can understand why people do. It’s a big room, there’s a big machine, and just you.

Most people told us that they had had enough information, and were glad that they had taken part or were still taking part in a trial, and that the results might help others in the future. They felt that they had been well looked after. They had been able to call the trial nurse at any time to report side effects or ask questions and they had seen a doctor regularly. However, Rory, who was still in the TeloVac trial at the time of her interview, said that she sometimes felt she was just part of a research project; a ‘little bit of a cog in a wheel’.

When treatment failed people were naturally disappointed and some had mixed feelings about having taken part in the trial. Some said that when taking part in a trial they (or their relative) had been regarded as ‘data’ rather than ‘a human being’. Bob, who experienced bad side effects (see above), said that he felt he had been a ‘guinea pig’ and that the professionals had been more interested in the trial results than his wellbeing. Ben, who was told he could no longer continue with the vaccine injection in the TeloVac trial because he had bad side effects, felt a bit confused. He was surprised that he no longer saw the doctor monthly or had a regular CT scan. He did not know what was happening and wanted to know more.

For more information about current clinical trials for pancreatic cancer see Cancer Research UK website. For more general information of clinical trials see our website - Clinical trials.

* "A type of treatment that uses substances made from living organisms to treat disease. These substances may occur naturally in the body or may be made in the laboratory. Some biological therapies stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases. Other biological therapies attack specific cancer cells, which may help keep them from growing or kill them. They may also lessen certain side effects caused by some cancer treatments. Types of biological therapy include immunotherapy (such as vaccines, cytokines, and some antibodies), gene therapy, and some targeted therapies. Also called biological response modifier therapy, biotherapy, and BRM therapy.” National Cancer Institute 2015.


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Last reviewed September 2018.
Last updated September 2018.

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