Chemotherapy destroys cancer cells using anti-cancer drugs called cytotoxic drugs. Here people talk about their experiences of having chemotherapy for pancreatic cancer.
When is chemotherapy used for pancreatic cancer?
Chemotherapy can be used to treat pancreatic cancer:
- After surgery to remove the cancer, to try to stop the cancer coming back.
- If you can't have surgery to remove the cancer, it can be used to shrink the cancer. This can help treat the symptoms and help you to live longer.
- Some people may be able to have chemotherapy before surgery ('neoadjuvant chemotherapy'). This is to help shrink the cancer and make it easier to remove. This is not available everywhere yet because doctors are still testing it.
A consultant explains when chemotherapy is used for pancreatic cancer.
A consultant explains when chemotherapy is used for pancreatic cancer.
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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.
A consultant explains why gemcitabine and capecitabine (a tablet form of fluorouracil) are often used in combination.
A consultant explains why gemcitabine and capecitabine (a tablet form of fluorouracil) are often used in combination.
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And what is the standard chemotherapy?
So the standard chemotherapy in advanced disease is a drug called gemcitabine. It’s a well tolerated drug, and it’s given in the outpatient setting. And it’s a very acceptable treatment for most people to be able to live alongside and continue a reasonable quality of life.
And that drug is also being used in the earlier stage, in what we call the adjuvant setting, although the treatment that’s had the most evaluation is a drug called 5-fluorouracil, and that drug’s been around a long time, but more recently evaluated in the context of colorectal, sorry pancreatic cancer, and shown to be beneficial.
So some patients may be offered a 5-fluorouracil based chemotherapy regime, and others may be offered gemcitabine. But on the whole the benefits look pretty much the same.
If patients say that they’re having gemcitabine and capecitabine, would they be on a clinical trial then?
No. Because the first work, the first treatments developed in pancreatic cancer have been 5-fluorouracil and gemcitabine. And so one could argue that if you put those two drugs together might you get better outcomes. Now more recently 5-fluorouracil, which is given intravenously, has been largely replaced by an oral formulation called capecitabine. And trials have been done with this combination, mainly at the moment in advanced disease, and an important trial called the gemcap trial was performed in the UK and compared gemcap to gemcitabine, and although it showed that there were better response rates, there were, more tumours appeared to shrink, the overall survival benefits were the same. So there is some controversy really as to whether or not the standard of care is gemcitabine or gemcap, and some centres will choose one and some centres will choose the other. That combination is now being tested in the adjuvant setting.
Deciding whether to have chemotherapy
The people we interviewed usually had a choice about whether or not to have chemotherapy. Some people said that their doctors had made all the treatment decisions and that was fine. Others wanted to be more say it what happened.
People we spoke to were keen to have chemotherapy where the aim was to shrink the tumour to make surgery possible (neoadjuvant chemotherapy). They felt it was the only option. Where chemotherapy was offered after surgery people usually agreed without question. Usually their doctors had recommended it. A few people, like Ann, weren't keen to start treatment (see below).
Tony didn’t know what chemotherapy involved and felt scared. Some people are not able to have surgery to remove the cancer. Chemotherapy can be offered as a way to treat their symptoms. People we spoke to felt that they didn't have enough information to make a choice. A few decided to stop treatment and others chose not to have any treatment at all. Their doctor had said that there would be few benefits when compared to the side effects.
Ann feared the side effects of chemotherapy and found the decision to start the treatment very hard. She felt pressure from others and from within herself.
Ann feared the side effects of chemotherapy and found the decision to start the treatment very hard. She felt pressure from others and from within herself.
Sex: Female
Age at diagnosis: 62
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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.
Dorothy felt well. She decided not to have chemotherapy because her doctor said that it would have limited benefit at the expense of quality of life.
Dorothy felt well. She decided not to have chemotherapy because her doctor said that it would have limited benefit at the expense of quality of life.
Age at interview: 81
Sex: Female
Age at diagnosis: 79
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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.
What happens during chemotherapy?
Most people we interviewed had the standard treatment of chemotherapy. This means the drug gemcitabine is given as drip into your vein. Some also had the drug capecitabine in tablets.
Chemotherapy is given in cycles of four weeks. You get treatment for three weeks with 1 week off to rest. During the three weeks you are given Gemcitabine once a week and take capecitabine pills every day.
Treatment usually lasts for six cycles with regular check-ups. Some people we spoke to had fewer. For instance, Adrian’s chemotherapy was stopped after only one cycle because he became more unwell. Maureen had an allergic reaction after her first treatment and this delayed her second treatment.
Peter had three cycles of chemotherapy. Then he had a scan and was delighted to hear that his tumour had got smaller.
Peter had three cycles of chemotherapy. Then he had a scan and was delighted to hear that his tumour had got smaller.
Age at interview: 71
Sex: Male
Age at diagnosis: 69
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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 own”. 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.
Some people had other drugs. Alison had gemcitabine with cisplatin. David had fluorouracil.
Peter had a neuroendocrine tumour. He had three chemotherapy drugs: streptozocin, fluorouracil and adriamycin. He stayed in hospital for a week each month for three months, to have his chemotherapy treatment. The rest of the time he was at home. Search 'Streptozocin' on the Macmillan Cancer Support website for more information.
Peter had chemotherapy. The aim was to shrink his neuroendocrine tumour to make surgery possible.
Peter had chemotherapy. The aim was to shrink his neuroendocrine tumour to make surgery possible.
Age at interview: 59
Sex: Male
Age at diagnosis: 49
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I remember when the chemotherapy arrived from America, it was treated by the nurses a bit as though it were kind of semtex, you know, sort of a banned substance. It came in sort of yellow bags, and it was handled with care. Well so it seemed to me anyway.
So for each treatment you had to get it from America?
I think it, well yes, I think it came, I’m not quite sure how, I never asked quite, or maybe I did but I forget. I don’t know what form it came from America. But it came from America yes. I think they must have had some kind of license to use it. I don’t think it was like banned in the sense that it was, it just wasn’t, yes it wasn’t licenced for use exactly, and apparently there are quite a lot of chemotherapies like that, and chemotherapy’s been around since the first world war and some of the early ones were pretty unpleasant and not very effective and they gradually get replaced by better ones that are more, that are more precise and have fewer side effects. But that leaves behind possibly, and it certainly seemed to me, a number of drugs which have worked in the past, even if they are unpleasant which people didn’t use anymore. Anyway this was one of those. And I agreed to have this pumped into me for a few months to see what happened...
I was treated as an in-patient for a week. And I remember it was a cycle. It was a very strange experience to me. Obviously I’d never had chemotherapy before. I’ve since discovered this is, there are a lot, many of these cycles. I was in hospital for a week having the stuff intravenously, and being watched over quite carefully while it was being put in… I had a week in hospital. And then the rest of the time I was at home....
And that was for three months?
And that was for three months after which they said they would have a look and see if anything had happened. And I had, I mean my impression, certainly from people, at the time and since, was that the people who were doing this did not really think that anything would happen.
How is chemotherapy given?
Chemotherapy can be given in different ways, depending on the treatment. Gemcitabine is given by a drip into the vein (intravenous chemotherapy). People we spoke to had the drip attached through
- A cannula - a short tube that goes into a vein in your hand or arm)
- A central line - a long thin tube that goes into your chest or arm. A central stays there for the whole course of your chemotherapy. A small bit of the tube stays on the outside of your body.
- A port or portacath - this goes into a vein and makes an opening under the skin.
People said that the nurses sometimes find it difficult to put the needle or cannula into a vein. This made some people dread their treatment. One man said that his veins ‘went into hiding’ when he went for his chemotherapy and it took nurses three or four attempts before they found a vein. Carol also said that she ‘hated those needles’.
Alison had her chemotherapy via a type of central line called a Groshong line (see ‘Radiotherapy and chemoradiotherapy’). Rory, a woman we interviewed, recommended having a portacath.
Rory got in a 'terrible state' wondering if the nurse would find a vein so she had a portacath inserted, which made chemotherapy easier.
Rory got in a 'terrible state' wondering if the nurse would find a vein so she had a portacath inserted, which made chemotherapy easier.
Age at interview: 66
Sex: Female
Age at diagnosis: 65
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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 portacath”, 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 portacath”. She said, “Don’t let them put one of these others in”, she said, “which is all exposed”. 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.
Starting chemotherapy
You may have a scan before chemotherapy treatment starts. The doctors use this to check later whether the treatment has worked.
Before each intravenous chemotherapy infusion, people had blood tests to check that their blood was healthy enough. Some also had their blood pressure and body weight checked.
Before each of her chemotherapy treatments Alison had her weight and blood pressure checked and had blood tests.
Before each of her chemotherapy treatments Alison had her weight and blood pressure checked and had blood tests.
Age at interview: 44
Sex: Female
Age at diagnosis: 41
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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.
Most people had their chemotherapy in an NHS outpatient clinic. A few people had private treatment and had their own room, even as an outpatient.
Michael had his chemotherapy in a private clinic. The doctors and nurses were 'brilliant'. He could have complementary therapies while he was there.
Michael had his chemotherapy in a private clinic. The doctors and nurses were 'brilliant'. He could have complementary therapies while he was there.
Age at interview: 65
Sex: Male
Age at diagnosis: 63
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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 it… Then 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 during chemotherapy?
Chemotherapy usually means spending several hours in the clinic. You will see a nurse or doctor, have tests and wait for the drugs to be prepared before having the treatment itself.
Most people described the atmosphere in the clinic as ‘pleasant’. They said the nurses were excellent and tried to make them feel relaxed. Some told us there were comfortable arm chairs, books, DVDs and refreshments. People said that it was nice to chat to other people who were having treatment and it could be a source of support.
William described what happened when he had chemotherapy. He liked the atmosphere in the clinic and said that people tried to make it pleasant.
William described what happened when he had chemotherapy. He liked the atmosphere in the clinic and said that people tried to make it pleasant.
Age at interview: 49
Sex: Male
Age at diagnosis: 49
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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.
However, others didn't like sharing their treatment sessions with lots of other people. They didn’t want to chat. Phil was shocked to be in a room with 40 other people. He said that it was too impersonal having lots of different nurses looking after him in the same treatment session. Simon and his wife found the clinic a bit depressing.
Simon and his wife Karen found the atmosphere in the oncology clinic rather depressing. Karen disliked having the needle inserted.
Simon and his wife Karen found the atmosphere in the oncology clinic rather depressing. Karen disliked having the needle inserted.
Age at interview: 39
Sex: Male
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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.
People who didn’t like the idea of having toxic drugs put into their body tried to look on the positive side. They said that it was to help them. Carol referred to her treatment as her ‘best friend’. After their treatment some people continued to associate certain smells with chemotherapy, such as a particular perfume worn by a nurse.
Michael felt that the gemcitabine and capecitabine were poisoning him but he also recognised that the drugs were getting rid of the cancer.
Michael felt that the gemcitabine and capecitabine were poisoning him but he also recognised that the drugs were getting rid of the cancer.
Age at interview: 65
Sex: Male
Age at diagnosis: 63
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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.
People often experienced side effects of chemotherapy.
Last reviewed November 2020.
Last updated November 2020.
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