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.

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.

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.

No.

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.

Okay.

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

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.

o 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.

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.

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.

Preventive?

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.

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.

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.

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.

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 perso. 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.