Could you just sum up when chemotherapy is recommended and why in different situations?

So if we concentrate on pancreatic adenocarcinoma, the more common form of cancer, we use chemotherapy in two main situations. Firstly after surgery, we know that patients still have a very high risk of recurrence from that disease, and so the overall survival of patients with pancreatic adenocarcinoma, even if they’ve undergone potentially curative surgery, is not good. And we’ve used both, in this country and worldwide, we’ve evaluated the role of what we call adjuvant chemotherapy, chemotherapy after surgery, to try and improve the outcome, and improve survival rates. And studies have shown that in this context using chemotherapy does improve survival chances. So we now have standard adjuvant chemotherapy for pancreatic adenocarcinoma.

But those benefits are still limited, and we’re always trying to improve upon that, so sometimes patients are offered alternative treatments in that context, usually within clinical trials.

In advanced disease, because again outlook is not great, and survival durations are relatively limited, again we are trying to kill off tumour cells that are spreading throughout the body and again chemotherapy is used here. The role again is quite limited, at the moment the treatment that is offered as standard improves survival in the order of weeks and months, and not years in general. So again we’re trying to improve on that treatment all the time by looking and seeing whether we can use different forms of chemotherapy, or now, what are called molecularly driven treatments. Because we’re learning more about these, the cellular mechanisms that control cancer and now clever people in pharmaceutical companies are actually discovering new drugs that can be targeted against the specific processes that we think are controlling the cancer process, and sometimes using those either instead of or in combination with chemotherapy.

So you got back from the summer
Hmm.

and you felt pretty well. Optimistic?

Yes, optimistic and well, because once you stop feeling ill actually, I mean, I certainly wasn’t thinking about, well I managed not to think about the prognosis really, which I knew wasn’t terribly good but I managed just to put that on hold and not think about it, until I had to go and see the consultant and talk about what I was going to do, chemotherapy or not. And I certainly, I think, before I went away in the summer I was saying, I’m definitely not doing it I felt quite pressurised about doing it, having at least some of it, at least trying it and the statistics I’d been given, I had a 60% chance of recurrence within two years, which I was quite shocked at how high it was. And that if I had the gemcitabine, which is one of the chemotherapies that they use that has been shown to be more effective than the 5-Fluorouracil, which they used to give, which if you take that for six months weekly then you, the likelihood of recurrence is down to about, is brought down by 20%, so that would be 40%. But of course, within that you don’t know who’s actually going to benefit. And whereas with the operation I knew I had to have it. If I didn’t have it I would obstruct, get jaundice and be very ill and die. With this it’s very different, it’s thinking, Well it might help and it might not but while I’m having it I might be very ill. So that was a really, really difficult decision, and I kept not wanting to think about it, in fact tried not to think about it.

When you say you felt pressurised, do you mean by yourself or by other people?

Both really. I felt pressurised by myself in that I felt if I get a recurrence and haven’t done it, people will say, Well it serves you right And they may not actually say it but they probably would think it, Well that was a silly thing to do So I felt slightly pressurised by myself. I felt more pressurised that my family particularly wanted me to at least try it. And my friends, that I should at least try it because a lot of people said, this particular chemotherapy isn’t so terrible, it doesn’t make people so, so ill.

When he suggested that you didn’t have any more treatment, like chemotherapy, was that an easy decision for you to make, or did you think about it for a while or look for information or?

No, I didn’t look for any information at all. I haven’t got a computer or anything so I can’t get on the net. I didn’t look for any information because I thought right, if that’s what they say, I’m, in my mind I thought I may have had this for a while, it may go on for a long while still just in the same position, therefore, just, just go along with it. Just go along with it. I didn’t think oh yes I must have, I ought to have some sort of treatment to get this better, no, because I wasn’t and I am still not in any pain from it.

So for the next month or so there was more scans and bits and pieces, and then they arranged chemotherapy commencing on September 22nd, in three cycles, on the day 1, 8, 15 basis. I.e. day 1 is the first treatment, and a week later day 8, 2nd treatment, third treatment day 15, fourth week day at rest and then start again.

Do you know what the chemotherapy was called?

No.

Gemcitabine?

Yes.

And it wasn’t part of a clinical trial?

No. No. Where was I? Oh they said, After the three cycles we shall scan you to see how you’re getting on. And we have to tell you that should it not be working we shall have to withdraw the treatment and we’re sorry but you’ll be on your ow. Good news wasn’t it? But anyway we carried on. I missed a fair few of the treatments, usually the 2nd one for some reason, which I know not what.

And, anyway, come December they did a scan and told me, well they told the surgery, I’ve got the letter somewhere under a pile of papers, they told me that not only had the tumour stabilised, it had decreased.

Oh that was good.

In the order of 70%.

Excellent.

And so the treatment, the chemotherapy will be continued.

And how many hours do you sit there with the infusion?

Usually it’s half an hour, half an hour. And I’ve got a portacath.

Can you explain to me what a portacath is?

[Laughs] well, I’m not medically trained so I might not be telling you exactly right. But once again I wasn’t told about this, I found out from another patient who said, Oh what you want is a portacat, because my veins are very deep seated and I was getting myself into a terrible state wondering if the nurse would be able to find my vein and oh it was dreadful. And I had some very unpleasant experiences, you know, while they were trying to find a vein. And then the vein would collapse. So having talked to somebody else who was on a different cancer treatment to me she said, Oh, what you want is a portacat. She said, don’t let them put one of these others i, she said, which is all expose. She said, Just have one of those she said, and you can even swim with it So that’s what I’ve had. And what they do is they insert a little valve underneath your skin and this leads directly into your vein so I can have the intravenous chemotherapy and they just if you like, plug me in really. You can’t use it for a CT scan because apparently the people in the CT department aren’t specialised to use this portacath then, I still have to have it, the vein found conventionally. But it means, it’s saved my veins
… and it means that when I do have to have blood taken obviously weekly, excuse me, my veins are in a fairly good nick considering I’ve had so much chemo, chemotherapy, excuse me.

Is the valve covered with anything? Or is it just
No, just my skin. No, nothing.

Hmm, brilliant.

Nothing After I
How do they get to it?

Well they, if you’ve, it’s like a little lump and that leads directly into the vein and they access it with a needle.

Oh I see, through that little bit of skin.

That’s right, yes.

And was that, were the hospital surroundings and the treatment all right?

Yes, yes. It was a private hospital, and it was a nice clinic. There were oncology specialist nurses there, as well as nurses who dealt specifically with chemotherapy. And my consultant had his clinic on a, on a certain day in the morning. You’d go in and you’d have, you’d be weighed and have your blood pressure done, and then you’d have your bloods checked to see that everything was, was all right. Mainly your neutrophil count they’re, they’re looking at, to, to ensure that the chemotherapy wasn’t actually zapping you of your resources as it were. And if that was all fine, they also checked the cancer marker on a monthly basis as well, but if that was fine, then they’d go ahead with the chemotherapy. And it took I’d say from start to finish, I’d usually go in for about 9 o’clock and I’d be out by about 4.

A long day.

So it was a long day. But I had my own private room, so I could take my laptop in, I could read. I could do my own thing.

And I think the other thing that when I started the chemotherapy, the clinic I was in was absolutely fantastic in the, I can only call it sort of love and affection and professionalism they gave one. And when you went down there you were the sort of celebrity there. Everything was done to make your visit there as comfortable as possible and they were very sensitive and they were always enquiring, asking how you are and what they could do to try and help you. And you had alternative treatments there. You could have reflexology, reiki or aromatherapy, and the other thing for women, which I thought was, and even men if you wanted it, there was a woman there who gave talks on image. So, you know, how to dress if you had, for women, if they had hair loss, they told them the sort of hairstyle, sort of make up to use, and I think this was a number of, well, lots of women had a session there and that really helped them I think enormously so that so they could still feel attractive during this treatment. It wasn’t so relevant to men because I don’t think we think too much like that, but itThen there was someone who, a specialist in nutrition, a specialist in homeopathy and then a psychiatrist who could give you advice if you had emotional ups and downs. So there was not only the medical team but there was this tremendously helpful support team around you, and again, the doctors who looked after me were all internationally known and again were absolutely brilliant in the way they, the positive attitude they took with one and encouraged one and helped one get through the troubles.

What happens on that Wednesday?

You go, I start the cycle by having a blood test on the Monday. And then on the Wednesday they look at the blood test and then so long as everything is okay they’ll give me the chemo. And they put my hands in hot water to make the veins come up and then they put the cannula in, in one of the veins which they’re happy to put in. And they flush it through with a solution while they wait for the pharmacist to mix my chemo. Because the hospital I’m at doesn’t buy its chemo in, it actually mixes it themselves. And that can be a two-hour wait, sometimes three hours waiting for the, the chemo to come down from the pharmacy. And all the time you’ve got a slow drip just going through your cannula. And then they come with the chemo. And that chemo bag takes twenty minutes. And after twenty minutes they just flush through the tube and then you’re free to go. Take the cannula out, put a plaster on the, the spot, and then you come home. So the whole procedure can take three, four, sometimes five hours.

And the staff in that department?

Rushing around, overworked, very pleasant. And the cancer charity comes round making people cups of tea and if you’re there at lunchtime they bring you a sandwich. And there’s reading material. There’s a DVD you can borrow. So it is made as pleasant as it can be. But it’s all right. You can’t complain. You start to know people. So, you know, the Wednesday team, you see the same people, so you strike up a relationship with them.

Can you describe what happened during a sort of typical day of having her chemotherapy?

In the early days at the, at the NHS hospital you know, you walk into the waiting room full of you know sick people. A big waiting room, it was quite a busy department really. And we always felt very uncomfortable there and, quite sort of, I don’t know, what’s the word, sort of self conscious in a way as well because Karen was you know, for someone with cancer was very young. She was only 39, so we were younger than most people there. And she also looked well. I mean even, even months into her treatment, after months of chemotherapy she looked as well as anyone else. I mean she was just so physically healthy and fit. So we’d sort of go in there, these sort of, you know we felt relatively young, healthy looking people.

And I always felt slightly self conscious, but also just depressed by the atmosphere in there because it’s just, it’s just not nice. I mean you know people are friendly, and we, but we didn’t really want to, Karen never saw herself as a patient. So she was never going to be one of these who would go into the waiting room and get to know people, because you see the same faces every week. But she was never going to do that. She, we would sort of stay on the outside and just read a magazine and try and take our minds off it.

And then going to the, you know the chemo room, which was very odd the first time I, we went in there because, it just looks like another, well I suppose it looks like a treatment room, but just with armchairs. And there were just people casually sitting there, reading magazines, with a drip in their hand. And again, being ignorant as to really what goes on, what chemo was, I always thought you’d be in a room with all sorts of equipment and, so it seemed all very low key.

And you know she would sit down, they’d go through all the paperwork, checking her name and double checking and all that sort of rigmarole. And get her hooked up. She never liked the needle going in, it always hurt a lot. And I think she was just tense you know. And then it was a case of just sit there with the machine next to you pumping away, beeping away, and I would sort of sit with her and we’d talk and try and take her mind off it. There was a lovely woman who used to come round and give us biscuits and you know get drinks.

Do you know what her chemotherapy was called?

Yes, she had gemcitabine and another one that I can’t remember now.

Capecitabine?

Yes. Gemcap yes, that was it. So she had both.

So she had that for a few weeks first of all?

Yes. Well this was, this was on the trial so it was, I think it was twelve weeks of chemo. But it was every, they were four week cycles so I think it was three weeks on and then one week off.

I just felt I was poisoning myself, and in fact, I much preferred going into the clinic, I went to a private clinic, and having the gemcitabine drip, and all that, all the sort of treatment, well, it was basically the gemcitabine drip. What I had was I would go two weeks – it was a three week cycle with one week off – and I’d go in every week to have the gemcitabine drip and then I’d come home and I’d have the capecitabine tablets and a load of these other tablets to counter any side effects. But I was taking a sort of massive amount of tablets and it really, I did I did feel that I was poisoning myself but one had to try and put it in a more positive frame of mind that in fact one might be but at least it was doing one’s body some good and getting rid of the cancer.