Doctors use various cytotoxic drugs (chemotherapy) to treat people with pancreatic cancer (see ‘Chemotherapy’). The side effects vary from one drug to another and according to the number of treatments given. Different people react in different ways.

Most people we interviewed had had gemcitabine, with or without capecitabine. Common side effects of gemcitabine include flu-like symptoms, fever, reduced resistance to infections, bruising or bleeding, tiredness sometimes due to anaemia, nausea, vomiting, poor appetite, skin rash, change in liver or kidney function, and fluid retention causing swollen ankles or breathlessness. Less common side effects include diarrhoea, hair loss, and mouth sores or ulcers. The side effects of capecitabine are similar. This drug may also cause soreness and redness or darkening of the palms of the hands and soles of the feet (sometimes known as hand-foot syndrome), abdominal pain, taste changes and angina. 

Some people said that they had tolerated gemcitabine, with or without capecitabine, remarkably well. Helen, for example, felt tired but managed to go back to work. David’s (Interview 30) wife felt a ‘bit unwell’ but otherwise the side effects ‘were not dramatic’. Many felt a little sick at times and off their food but had medicines to counter nausea. Some said their hair had thinned but had not fallen out completely. Others said they had avoided side effects altogether by following advice to take anti-emetic drugs to counter nausea, use mouthwashes and clean their teeth frequently.

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Hugh's mother seemed fine throughout her chemotherapy. She did not lose her hair.

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While taking gemcitabine Audrey felt tired, had some flu-like symptoms and sometimes had blood transfusions, but could continue her normal activities.

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Michael had gemcitabine and capecitabine. Apart from a little nausea he had no serious side effects, but sometimes felt tired, emotional and irritable.

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What about side effects of chemotherapy? You said she didn’t lose her hair. Did she have any other side effects do you remember?

 

No. I don’t remember her having anything bad like that from the chemo. The chemo went on for I think about six months, and she seemed fine through it, and it was really you know, eventually she got ill again, but that was the cancer not the chemo.

 

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Age at interview:

73

Sex:

Female

Age at diagnosis:

69

Background:

Audrey is a teacher, now retired. She is married and has 3 children. Ethnic background/nationality' White British.

The side effects were the first day after the treatment I was full of beans I could have, you know, gone right through the house and really well and very rosy cheeks, really, really red and I was a bit concerned about that but I asked them and they said that is part of the side effects. And then the second day afterwards you start to get a bit tired and this shivery flu like feeling but it passes and there’s no hair, no complete hair loss, it goes a bit thin but you don’t lose your hair. I don’t think it’s a very aggressive type of treatment. I mean this is only my, I don’t know how it would affect other people but it really hasn’t stopped me doing very much at all.

 

Good.

 

But then you’re just beginning to feel really okay and you have your next one.

 

So how many months did that go on for?

 

.... that went on till, I’ve got it written down, till the 26th September.

 

From the 25th April.

 

So getting on for five or six months?

 

Yes six months it was yes that’s right six months.

 

Did you have another CT scan at all?

 

Yes afterwards and he was very pleased with that. And then I think I had 12 months… when I didn’t see when, no I didn’t have any treatment I would see him at three monthly intervals.

 

Couldn’t complain about the treatment and very patient and spends time with you if you need them they seemed so busy, so it was the December, this is where I get mixed up with the dates… That’s right I had a scan on the 30th November but I don’t know what year it was. Sometimes while I was having the treatment I had to have a blood transfusion.

 

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65

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Male

Age at diagnosis:

63

Background:

Michael is a retired wine merchant. He is married with one adult child. Ethnic background' White, half Polish half British.

I think the only side effects, I couldn’t think, I didn’t feel sick very much. Very occasionally I felt a little sick but the domperidone sorted that out in a second. My main thing I think there was tiredness, I think one became a bit emotional and irritability so it was sort of mood swings I think.

 

You didn’t lose your hair or anything?

 

No, I said my hair, my hair thinned and I think, my feet didn’t crack. They got a bit ticklish at one stage but this Aveeno cream was absolutely brilliant. And so really with the chemo I was I was very fortunate and I, you know, I must say a lot more fortunate than a lot of other people. 

 

However, some people felt very ill at times. Side effects typically started a few hours after each intravenous infusion and lasted two or three days, after which many people said they had been able to resume their normal activities. In some the side effects were worse with each successive treatment. One man had ‘intense shivering’ on the evening of his chemotherapy. Phil also said he got a ‘severe fever’ when he had treatment. Infections need to be treated as medical emergency usually with intravenous antibiotics. Signs of infection include:

• A fever and high temperature 37.5C (99.5F) or over 38.0C (100.4F) depending on the hospital’s policy.
• Feeling shivery and shaky
• signs of a cough, sore throat, or pain or burning when passing urine, or diarrhoea
• suddenly feeling unwell, even with a normal temperature such as headaches, aching muscles or feeling sluggish (lethargic). 

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Ann felt very ill with each infusion of gemcitabine. She tried various anti-nausea drugs but these had bad side effects too. Nabilone helped a bit.

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Maureen had a bad reaction to chemotherapy. Her hands and feet became raw and painful (hand-foot syndrome). She had mouth ulcers and her hair thinned.

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Richard had a skin rash due to gemcitabine and a bad reaction to capecitabine. The skin on his scrotum peeled off.

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Saba's mother had gemcitabine infusions. She developed fevers and was prone to catch infections, so the dose was reduced.

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Age at interview:

62

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Female

Age at diagnosis:

62

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Ann is married with 3 children. She was a GP for over 35 years til her retirement when she developed pancreatic cancer, co-founder of the charity that runs healthtalk.org inspired by her own experience of breast cancer, and Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality' White British.

And during that time [when having chemotherapy] your mood is quite different from your mood when you’re feeling better?

 

Yes, completely different. And interestingly the pattern seems to be that the first few days I just feel dreadful, not depressed but just awful and nauseated and I do, am sick sometimes and just feel rotten. And then on the third day, by the evening, I start to get really quite depressed, tearful, and it’s like a physical thing on the third day in the evening that’s how I seem to get, that I can’t think I’ll ever get out of this, don’t know what to do with myself, the future seems very black, I am definitely going to die soon, I don’t really care about that but I just feel, just depressed. And interestingly by the next morning or lunchtime when I’m starting to feel better, all that depression’s gone and I’m happy to get up and do things and go swimming and just be very active again. And don’t feel that sort of depression, like a black cloud that comes, that people often describe when they’re depressed, that seems to come over me, for that evening, the third evening after the chemo.

 

You talked about having Nabilone, that was just the last time, wasn’t it?

 

Yes.

 

Another anti-, side effect …

 

Yes

 

...of the drug, to begin with?

 

The thing is that I have tried a lot of the anti-nausea drugs and most of them give me side effects, make me agitated or Parkinsonian or feel, feeling dreadful. There’s one called Ondansetron which has fewer of those side effects but interestingly this last, the first two times I had the chemo I had it intravenously, with the chemotherapy. The last time, the third time I had the chemo I took, took it as instructed three or four hours before, by mouth and I was already getting side effects from that, which I had put down to the chemotherapy, stomach gripes, feeling just a bit heady and not very well, obviously from the Ondansetron. So it’s a bit of a balance as to whether you take, whether I take that, Ondansetron to stop me feeling sick, which doesn’t completely work at all, but gives me other side effects, or not. And so we decided to try the Nabilone, which is a cannabis type chemical, because last time when I had breast cancer that did seem to be one of the things that helped. 

 

I was rather disappointed that made me feel so knocked out and just woozy, but it, I, in a way, anything is better than vomiting and nausea. So I’m, certainly next time I’ll take it for two days. It just seems when it’s every week, having, feeling ill for three and a half, four days every week, it, it seems that you’ve only just half recovered when you’re onto the next one. And for me I don’t think I could do that for six months. But if, you know, if you don’t get bad side effects, obviously that’s a very different story and I think different people do react very differently to these drugs.

 

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Age at interview:

64

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Female

Age at diagnosis:

63

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Maureen is a retired therapeutic counsellor; she is married with 3 adult children. Ethnic background' White British.

Anyway I carried on with the tablets. They then gave me this terrible side effect of; it’s called hands and feet syndrome, where my hands and feet not only swelled but they, they looked as if I’d put them in pots of red paint, it was like they’d been burnt. And it’s all the swellings, I couldn’t even bend even one bit of my fingers at all. I couldn’t put one step in front of the other without it being really, really painful. So when I went back to see the consultant she actually reduced the, the tablets. And also wouldn’t give me the second and third intravenous. But we had a discussion and she gave me options as to what they call then, ‘re-challenge’, so I go back onto the same drug. And having been told this was the gold standard drug, and that the option would be to go onto a drug that was designed for bowel cancer, I really, really wanted to stay with the one that was designed for pancreatic cancer. What the consultant came up with was to give me some steroid tablets on the night before and then a steroid injection and a piriton injection before having the gemcitabine, which is what we did for the second cycle and thankfully it worked. And although I get some effects from the other drugs, you know, it has meant that my body has tolerated the chemotherapy. So that was a, a big relief and I was pleased to do that. 

 

The … by the time I’d got to the third month, my hands and feet, I’d, I’d spent nine days sitting on the sofa because I couldn’t hardly walk and I couldn’t use my hands. So the oncologist decided to not only reduce but to stop the tablets for that last month.

 

It does affect my mouth as well. It gets full of ulcers and that, which again is really quite sore. But I’ve, I’ve resourced, researched what I need to have and I’ve got in place, taking B6 to help my hands and feet, getting some creams to keep them as, as moist as possible, having a mouthwash to help with mouth ulcers. So I’ve got in place everything that I need to have in that sense to look after my body. 

 

The one thing I haven’t spoken about which I’ve just thought about is hair loss. And that happened fairly quickly. We’d moved in, it didn’t happen the first month, but the, by the time I’d got to the third month, and I was only taking the tablets and not having the intravenous, and one day I went in the shower and my hair was coming out. And for four days my hair just came out at a rate of knots. And I’d been told, “You won’t lose you hair but it will thin”. And I’ve got quite fine hair anyway, so losing a lot of hair over four days was quite traumatic [laughs]. So, but that just stopped. It, this sort of four, four days and then it just, it really sort of then just petered out. And I haven’t really had a lot of hair loss since then.

 

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59

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Male

Age at diagnosis:

58

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Richard was a finance director for a multi-national company. He is now retired. He is divorced and has three children. Nationality/ethnic background' White British.

And my initial reaction to the chemotherapy was fine. I didn’t have any problems for a couple of weeks. And then I got something which is very, very common, which is a skin rash, coming from the gemcitabine. And its, and it appears on various parts of your, your body, sometimes on your chest, on your arms, also on your legs, so that my, appeared around the groin as well. And sometimes it’s bearable, but it is very, very itchy. And the standard treatment for it is a course of steroids. But of course the doctor’s not necessarily very keen to prescribe steroids, and so it’s a question of how unbearable the itchiness is, versus their unwillingness to prescribe the steroids. And in the end the…

 

Was that because of the trial? Or because they didn’t want you to have steroids?

 

Didn’t want, want you to have steroids. And I think particularly because it’s; steroids are associated with depression and so on. But in practice of course I had this, I had the steroids, and the itchiness went away, and it was absolutely wonderful.

 

I also got some problems with my feet. Again it’s very common for, side effect, where the skin on the soles of my feel peeled away, and it was a little bit uncomfortable, but it actually never really disturbed me. And it was one of those things which I had to put up with, and endure.

 

I got occasional bouts of nausea, and a little, and sometimes a little bit of feeling of being off my food, but nothing, nothing too serious. 

 

Then just towards the end of my first cycle of treatment, I began to develop a very uncomfortable different skin rash, in my groin, and it was very, very painful. And we, and it was sufficiently uncomfortable that I presented myself in A&E on a Sunday morning. And anyway it was, it took a while for everyone to work out what it was, but it turns out that it is a very, very rare side effect of my other chemotherapy drug, capecitabine, and of course when you’re taking something in pill form, it just looks like a, a pill. It, you don’t think of it as being in fact a very serious heavy drug. It turns out in the literature that in a few men, this particular side effect presents itself. And of course in the course of that, I discovered that the whole process of deciding the dosage for this drug is everyone’s best estimate. It’s, there’s not a huge amount of science behind it, so we stopped me taking that drug then, and then when I restarted, in the next cycle we restarted it at a lower dose and the side effect never reappeared.

 

So there was nothing to alleviate that side effect?

 

No.

 

Apart from changing the dose?

 

Yes. Ah and it was very, very uncomfortable. It was probably the worst thing that I have had in my, in the whole period. 

 

Did it just look angry and red?

 

Well, effectively the skin on my scrotum peeled off.

 

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Age at interview:

45

Sex:

Female

Age at diagnosis:

65

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Saba is a designer. She is single and has no children. Ethnic background' Asian.

Anyway, they started the chemo treatment and, you know, it was at our local hospital and it, and it was fine actually. She didn’t, I think the first couple of sessions that she had, I think the first session she had had quite an impact on her physically. She kept getting a fever. She would get a fever for the first day or second day after and they, they said they could do that because the immune system drops as her, she could be prone to catching infections. We couldn’t let any children like, she couldn’t see her grandchildren during that time because, you know, young children often pick up colds and flus and we didn’t want her to sort of catch that. She did have nausea the first time but that was as a result to; they’d given her some antibiotics because I think she had got a bladder infection, a slight bladder infection. They’d given her antibiotics and I think that was a reaction to the antibiotics and not actually to the chemo. Because I gave her anti, anti-nausea tablets with the chemo as well and I think that, that really did help. But I think the first two sessions of chemo she was quite ill. And one thing we noticed that she’d got one of her eyes became completely bloodshot. So I think what they did was, I think the second time I think they put the dosage of chemo a little bit lower, because they felt that her body just was a bit too frail actually to sort of deal with it. 

Cancer can increase the risk of developing a blood clot (thrombosis), and having chemotherapy may increase this risk further. A blood clot may cause symptoms such as pain, redness and swelling in a leg or arm, or breathlessness and chest pain. Blood clots can be very serious. Most can be treated with an anticoagulant (drug to thin the blood). Tony developed a thrombosis in his arm. His arm felt as though it was going to burst. He had to have anticoagulant treatment in hospital. Rory developed a thrombosis in her leg.

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Rory developed a deep vein thrombosis in her leg. Her consultant told her to inject herself with Clexane, an anti-coagulant. Her leg improved immediately.

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Age at interview:

66

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Female

Age at diagnosis:

65

Background:

Rory is a retired teacher. She is married and has three adult children. Ethnic background/nationality' White British.

...on the Sunday evening I’d had an, an aching leg and so when I went on Monday they discovered that I’d got a DVT in the back of my knee. I thought, I suspected as much, you know, it just didn’t feel right and it was quite painful. And then on the Sunday evening my ankle really swelled up badly. So on Monday when I saw the consultant he, he was very funny actually, he literally physically got me by the hand and marched me up [laughs] to have a, you know, to see the other consultant who would scan it. And he stood by and waited while they, and they showed it me, it was just behind the knee.

 

Is that a result of the chemotherapy?

 

I don’t know. Obviously I understand that you are more vulnerable… but nobody had told me this until yesterday, then my nurse said to me, “Oh well of course this is one of these side effects so we’re going to put you on some Clexane.” So now, and, “Here you are, there’s a bag of Clexane and you’ve got to inject yourself.” So I said, “Ooh.” Anyway, she was very good and she took me through the procedure and so that’s what I have to do.

 

Is that into your arm?

 

No, into my tummy. 

 

Oh.

 

Yes. So, and it’s immediately improved the leg. The swelling has gone down immediately. But they were sort of quite sort of, you know, casual about it really and said, “Well, you know, just gentle exercise and, you know, but don’t sort of lie with your leg up too much. But you know, just take it easy”. And that’s, that’s, all they’ve told me to do. So I went out and bought some sports socks …

 

Did they tell you to wear a special sock?

 

No [laughs]. But I thought, “Well, perhaps that’s what you do”. So I went out and bought them from the sports shop and I’ve put one on this leg and it’s OK. But I suppose really in a way I’ve, well some people might think I’m blinkered and I haven’t, you know, but I feel I’m dealing with it in the way that I have to deal with it. 

 

Some people had had other types of chemotherapy so experienced different or more severe side effects. David (Interview 09) had felt like ‘death warmed up’ after his infusions of fluorouracil. He had blisters in his mouth and terrible nausea. Theodora’s mother had various chemotherapy drugs and lost enough hair to make her buy a wig.

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Alison had gemcitabine and cisplatin. The cisplatin caused peripheral neuropathy. She had an early menopause, but it did not suppress libido.

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Peter had streptozocin, fluorouracil and adriamycin to shrink his tumour. He found it hard to move his limbs, had an infection and his hair fell out.

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John forgot the name of his chemotherapy but very bad side effects included nausea and vomiting, diarrhoea and pain.

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Age at interview:

44

Sex:

Female

Age at diagnosis:

41

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Alison is married and has 2 children. She is a PhD student. Ethnic background/Nationality' White British.

So, and I, to be honest, the chemotherapy itself, I felt like I’d been run over by a truck the night after I, I had it. It was intravenous chemotherapy, two drugs given on the one day. So it was the whole day, essentially, spent in, in hospital as an outpatient. But I came home and would have a light tea and I’d go to bed early, and really not feel that bad, the next morning amazingly. I thought I’d be as sick as a dog, but I wasn’t. And I’ve got a whole stack of anti-emetics, which are the anti-sickness tablets, that are still in the cupboard. I don’t know whether I should give those to somebody [laugh]. But I didn’t use them, because I didn’t have to. So that was, so that was great. I’m not saying that it was a, a ball by any stretch, but it wasn’t as bad as I’d imagined it to be. So, and I’ve still got a few, well, probably only really one main side effect from, from, well, a couple of side effects from the chemotherapy. And that’s, one of them is I had a platinum drug, which means I now have something that’s called peripheral neuropathy. And it means that when it gets very cold I can lose the, the feeling in my fingers. And doing up buttons in December can be a bit tricky. And standing on cold platforms and things like that on the way to work can aggravate it. But, and the other thing is the early onset menopause that’s happened as a result of the chemotherapy treatment. But apart from that I haven’t got anything.

 

Has it been tough dealing with the early onset menopause?

 

It’s just another one of those things that you have to deal with. And it, it’s, you shouldn’t get angry about it but, because I’m still here, I should be ha-, happy about that, but it’s a frustration. And it does awaken some emotions in you, mainly because your hormone imbalance is going up and down. 

 

I guess your sex life is affected too?

 

Yes, funnily enough, it’s not been so bad. I mean it’s, I think the emotional strain of, of having the cancer, and everything. I wouldn’t link that to the menopause in particular. But in a funny kind of a way the, the chemotherapy treatment, should I say this on, on video, did wonders for, for that aspect of, of my life when it shouldn’t have done. It was, it’s supposed to suppress libido, and with me it didn’t. 

 

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Age at interview:

59

Sex:

Male

Age at diagnosis:

49

Background:

Peter is a journalist. He is married and has two children. Ethnic background/nationality' White British.

However at the time when I was taking the chemotherapy the effect of being on a good diet, and not working and also feeling that something was being done, you know, that that no-one thought the chances were very good, but at least something was being done. I felt really rather good that first week in hospital.

 

And then it, the second week you feel pretty crazy, you know, then all the familiar things. A bit of a shock the first time your hair starts to fall out. You find it very difficult to move your limbs. You, your body is a different, or my body anyhow was, didn’t all seem to be necessarily part of the same body. And the third week it was all those symptoms, really intensified, with, I was told a high degree of danger. I think I was in bed a lot then because I think it was quite, it was considered I was very, very open to infection....

 

And I think in the second or third cycle I did get a, an infection which they warned me could happen. And your, your immune system I think is pretty much gone when you’re having this kind of treatment. And so any kind of thing which would just normally be in the air can lay you low. And I think that’s one of the most dangerous aspects of it. I remember getting you know extraordinarily high temperature one night you know, and being, that’s when I was, that was the only time I think I was actually rushed to hospital, and there were sirens and ambulances and things. And I picked up a sudden infection because my body had no immunity to it.

 

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Age at interview:

57

Sex:

Male

Age at diagnosis:

52

Background:

John was a shipwright before he retired in 2007 due to ill health. He is married and has two adult children. Ethnic background/Nationality' White Scottish.

Yes, I went through a course of six months of chemotherapy, starting from the January to the June.

 

January two thousand and six.

 

Yes.

 

To June. Can you tell me about that then? Do you know what chemotherapy it was?

 

It was an American type, an American college, I think it was, had been working on this chemotherapy and when I first started it they told me that it, you know, there would be no loss of hair, there would be very little side effects but, unfortunately, for me I lost most of my hair and took every side effect, ranging from ulcers inside my mouth to sickness, diarrhoea and pain. It was really a terrible time. It went on six months. It took them three months to get the balance of the chemotherapy right, just to work within, where it was controllable for me, pain-wise. It was going for three weeks, every morning and then taking a week off and then going back again. So, unfortunately, for me it was once the side effects were just beginning to go away then I was back for more chemotherapy and started that cycle again.

 

Do you remember what the drugs were called? Was it gemcitabine?

 

No.

 

Something else, no.

 

No, I can’t remember.

 

You don’t know. So that was a difficult time?

 

Yes

 

What was it like actually having the chemotherapy?

 

Again, the chemotherapy was not a problem whatsoever. It was very quick, and again, when we went to the hospital and told them I was there, it was there it was prepared ready for me. They didn’t take long but the side effects were the horrendous part of it.

 

Did they give you anything to help you with the side effects?

 

They gave me various creams and mouth washes etcetera to try and take away the ulcers, and where at one stage I was, my throat was practically closed up and it was very, very hard to eat. I was in a state of kind of force feeding myself because it was terrible, and I had no appetite at all. It took me a long time to eat anything.

 

People coped with the side effects of chemotherapy in various ways. Some found drugs such as anti-emetics very helpful. Many different medicines can reduce nausea and vomiting, but Ann did not find medicines very helpful so she had to find other ways to cope with the side effects of gemcitabine. She said that she valued clean crisp sheets, hot water bottles at the right temperature and drinks made in just the right way. Peter (Interview 36) said that frame of mind was important too.

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Epicurus recommended that people should manage pain by imagining past scenes of pleasure. Peter dealt with his pain in this way.

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Age at interview:

59

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Male

Age at diagnosis:

49

Background:

Peter is a journalist. He is married and has two children. Ethnic background/nationality' White British.

Before we go on to talk about the surgery, can you just say a little bit more about how you managed the discomfort of having chemotherapy, or the painful sensations?

 

I got a good deal of advice, about how to deal with the effects of the chemotherapy, some of them from doctors and nurses and some of them from just knowledge and learning. One of the things I do is to study ancient philosophy. I’ve always been very interested in the philosophy of Epicurus, who’s a Greek philosopher who is most famed for saying that the whole problem of life can be solved by conquering our fear of death. He had a little sort of group of people who lived in Athens and who were much followed by the Romans who said, “Look if you could only deal with the fear of death, then the whole of your life would be transformed.” And he was a very, very influential early philosopher. 

 

But one of his other things that he recommended was to deal with pain; was to imagine past scenes of pleasure. And I distinctly remember being on, on the lawn in my house with, barely able to tell one leg from another, very, very disturbed perception of things around me, sort of rose bushes and fingers and thumbs. And, but being able to imagine a sort of photo box, picking out slides from past life. And I started by picking out slides of the things that I remembered that were pleasurable. You know being with my son on, on the Thames you know, being on holiday perhaps when I was, in Italy when I was younger. And then I realised that, and I was able to realise this, but it was even clearer later, intermingling with these stories of, with these pictures of things that I had seen, were pictures of scenes that I’d imagined, or scenes that I would like to have seen, and I’d spent a good amount of time on Lake Como when I was in my teens, and had been with some other crazy Italians who thought that they were ghosts of great Italian figures, ghosts of Spartacus, ghosts of Julius Caesar, ghosts of Pontius Pilate, ghosts of Pliny the Roman author who lived in, lived in Como. And the past was very vivid to these Italian friends of mine in a way that well, it isn’t to all. I mean they wanted to see them, and I would, and I never, of course I never saw the ghost of Pliny or Pontius Pilate although I was, when I was in Italy, but when I was sitting on my lawn with the effects of this chemotherapy, I was able to get together or I was able to, what came together was both a picture of what I was like, and a picture of what I wanted to see, so there were images of Pliny and of other great Romans, images of my Italian friends, images of me, all together in one, in one picture. And it took me a good deal, much later on, when I thought I’d forgotten all about this experience, when I was travelling in Italy again, thinking about writing a particular kind of Roman, Roman History book and following the journey, actually as it happens the journey, the journey that had been taken by Spartacus as he fought the Romans in 73, 71 BC. But what was coming back to me when I wrote each night about this history were, was an extraordinary amount of these memories and imaginings and pictures that had, that had come when I was dealing with the chemotherapy.