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Lymphoma

Unwanted effects of chemotherapy

Chemotherapy damages healthy cells in the body that are dividing quickly. This is the main cause of the unwanted or side effects of treatment. Side effects vary depending on the drugs used and everyone reacts differently. For most people the side effects were worst in the first few days after treatment, then they gradually felt better until the next treatment. Some said the effects were worse with each successive treatment. Most side effects don't persist and disappear within a few weeks after the end of treatment.

It is well known that chemotherapy can make you feel sick. This problem is now better understood than it was - nausea can be well controlled with medication. Some people expected to suffer nausea and vomiting but found that the anti-emetic medication worked well. 

 

Although she expected to feel sick after her chemotherapy, the anti-emetic tablets she was taking...

Although she expected to feel sick after her chemotherapy, the anti-emetic tablets she was taking...

Age at interview: 67
Sex: Female
Age at diagnosis: 67
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When I first started treatment I had a bucket near me in the living room and took one upstairs to bed for two or three nights expecting to be sick. It never happened, I didn't have any feeling of nausea or sickness and I haven't since. And I feel I can't tell enough people this good news because so many people express surprise and astonishment that I haven't had any nausea or sickness. 

You said you never had any nausea from this treatment?

No.

Did they give you anti-sickness drugs to take?

Oh yes.

And you're taking those?

I only take them for about five days after the chemotherapy session, that's all. So when I come home after chemotherapy session I have about four or five tablets which I take, but that's only that many tablets for about the first five days. After that I'm down to one tablet three times a day.

For many the medication meant they felt nausea without being sick, but others vomited. One man said that the hospital environment and the smell of the sterile wipes worsened his nausea and he recovered better at home. A woman said she vomited because she miscalculated when to take her first anti-sickness pill. A woman who had tried acupuncture believed it reduced the amount of anti-emetic she needed.

 

The anti-emetic drug prevented nausea until his sixth treatment, and he vomited on only one...

The anti-emetic drug prevented nausea until his sixth treatment, and he vomited on only one...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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The other side effect you've mentioned, I think you had with all of your treatments, was nausea?

Mm.

Did you have anti-sickness tablets each time?

Yes, each time pre-chemotherapy, sometimes they're a tablet, sometimes they're an injection. And they were very good. I think with the very first regime of chemo, the CMD, I think I said it was only the sixth or seventh where I started to feel unwell. The first one to three treatments I felt fine, I could just come straight from the hospital and carry on. After the fourth and fifth I needed half a day's rest just to kind of compose myself. But the sixth or seventh, yeah they were quite sick-making. But they only lasted, that feeling only lasted a day or so, and it's no worse, perhaps it's only my judgement, it doesn't seem to be any worse than people who are sea-sick, and you get better. 

So were you ever actually sick?

Only once, which was slightly embarrassing. It was actually after I'd had the seventh treatment. I left the hospital. My wife usually came with me every single time for the treatments, but on this occasion she actually was not well very herself so she reluctantly let me go for treatment on my own. And so I had the treatment, checked out of the treatment unit, went to reception just to let them know I was on my way out of the hospital, and on the way back to the car in the car park I actually vomited, I didn't make my car. It was just once and I went back and told them, because I was told that if you were sick within a short period of time of having the chemotherapy you'd better come back because they might have to do it again. So I was in sort of two minds about whether to go back, but I went back and I just said, 'Look I've just been unwell,' and they said, 'Well, were you sick a lot?' 'No, just a mouthful I suppose,' just to be graphic. And they said, 'No that's OK, you can go home.' 

So I actually drove home, being fairly cautious how I drove because I didn't feel well, and came and put myself straight to bed and slept for about four or five hours. And I really felt I had been poisoned, whatever that feels like, you know, you sort of see TV shows where people have been poisoned, and I felt poisoned and slept and slept through it. But the next morning I was weak, of course, and felt tired and exhausted from going through it, but I was OK, appetite was back, I could eat normally, and the day after that I was perfectly alright again. So the anti-sickness drugs really do work very well. 

 

Was very sick after her first chemotherapy treatment but less sick after later treatments because...

Was very sick after her first chemotherapy treatment but less sick after later treatments because...

Age at interview: 41
Sex: Female
Age at diagnosis: 19
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I started off really just thinking I was going to survive the CHOP. It wasn't very nice, it was probably worse than I expected. It made me very poorly and made me very ill, very sick, and I got a lot of infections while I was having it. But we survived, and it was also very hard having a young family at the time, but we did find lots of survival mechanisms, you know, coping strategies for coping with things. And the first few months were very, very hard up until Christmas, so this was treatment starting in October so it was kind of October, November, December, three months-worth of treatments. 

The first time round was the worst because we were getting to grips with all the drugs that were going to stop me being ill. After that probably the second and third times got easier because we knew what to expect and I knew what drugs to ask for, and so I was much less sick, I was on top of it a lot more. 

Many chemotherapy regimens include a steroid which reduces nausea but also increases activity and causes sleeplessness. Steroids often increase the appetite which leads to weight gain. People who are taking a steroid also often notice that their face looks more rounded, or 'moon-faced' - which some commented was a characteristic 'steroidal' appearance. A man who expects to remain on steroids for the rest of his life said they reduced his sex drive and weakened his bones. Both these side effects can be treated with medication.

Not all chemotherapy drugs cause hair loss but many people do lose the hair on their head, face and body. Some people's hair just thinned while others lost it all. Men and women sometimes chose to cut their hair short before treatment so that it would be less shocking for them (or their children) when it fell out. Wisps of hair often remained, so many people shaved the head. Some people wore a hat, a scarf or a wig to cover the baldness and keep the head warm. A few were offered a 'cold cap' to try to prevent hair loss. For more about hair loss and its psychological impact see 'Hair loss and body image'.

 

Lost all her body hair except the eyebrows; she cut short the hair on her head before it came out...

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Lost all her body hair except the eyebrows; she cut short the hair on her head before it came out...

Age at interview: 48
Sex: Female
Age at diagnosis: 43
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And I'd have that for about twenty minutes and then that were it and she says, 'Oh the next time you come your hair will have probably come out'. And I said, 'Oh so it's definitely going to come out then?' And she said, 'Oh yes.' Because of part of the chemo that I had, I did actually lose all my hair. That were a little bit painful as regards that it burns the follicles in your head and it just, because I didn't have long hair it was easier. And what we eventually did were we shaved my head down so that it was short and then I got in the shower and I just let the hot water onto my head and rubbed my head and it actually rubbed my hair away and it actually' But once it had come out I felt so much at ease with it because it had actually all come out and the pain had gone then, you know, there were no sensation on my head. 

I lost all my hair, my arm hair, all my pubic hair, everything just went totally. My eyebrows were about the only thing, they went really, really thin but they didn't quite disappear. But my eyelashes, the hairs up my nose, everything just went. And it were a bit funny really when you looked in the mirror because your head were just, it were like it were glowing, it were white with not having any hair and, you know, you'd got no eyelashes and you just looked very blank. I used to have a few problems with my nose, they gave me some nose cream, because obviously the hairs up your nose, you know, they protect you don't they, and you don't realise how much they do protect you till you don't have any. The same with the hairs on your arms and your legs and things, you know, I used to have right hairy toes and I still haven't got them, I haven't got hairy arms any more. I've just grown hair on my arms, under my arms. 

And she were right because within the three weeks that I went back for the second treatment I had no hair. And I started wearing, I didn't like the turbans, I used to wear the baseball cap and I had a lovely soft baseball cap and I still have it now because it's a little treasure to me and I've always kept it, and I used to wear that because it were lovely and soft. 
 

Chemotherapy drugs damage the lining of the mouth causing ulcers, thrush and altered taste or smell. Mouth washes were often supplied to prevent mouth sores. A woman with an ulcerated throat was given morphine to reduce the pain but had hallucinations and stopped using it. A man had such bad ulcers in his mouth that it was bleeding and he couldn't talk or eat. Many people complained that food tasted bland or horrible, metallic, or like poison. Some said they 'went off' the smells of perfumes or certain foods such as chicken, fish, cheese, or coffee. Some were put off eating completely and had to be fed through a tube. One woman could smell something that nobody else could but it disappeared after her treatment finished. 

 

His tongue furred up after chemotherapy and food and drink didn't taste right.

His tongue furred up after chemotherapy and food and drink didn't taste right.

Age at interview: 60
Sex: Male
Age at diagnosis: 35
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So what was the chemotherapy like, did it make you feel terrible?

Yeah you couldn't taste anything, you know, your tongue would be furred up and the taste of food or anything like that, it was horrible, well I say it was horrible compared with the natural taste, yeah. I will say I did drink at that time and if I went and had a glass of lager, it would taste, it wouldn't taste right anyway but you drunk it, you know, I'd start going red from the neck upwards. That's only when I had drunk lager then. But yeah it wasn't the best but that was twenty-five years ago now. I mean I know it's changed, it doesn't, I don't think it does the things that it did then but it was the early part of them learning that they could treat you. They hadn't had a cure not long before that.

 

Chemotherapy gave her mouth ulcers and she lost her senses of taste and smell; food tasted bland...

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Chemotherapy gave her mouth ulcers and she lost her senses of taste and smell; food tasted bland...

Age at interview: 48
Sex: Female
Age at diagnosis: 43
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I do remember while I was on the chemo I lost all sense of smell and I lost all my taste, and everything I ate tasted like cardboard, it was just horrible. I'm trying to think what did I used to eat that I could taste? Things that were just really tasty I had to eat because all my taste buds had gone. I just remember that everything just tasted really bland and horrible so I used to go for the, I had to be careful with curry because curry used to, it was so sensitive in my mouth, you're to be careful with spicy food and stuff like that, but stuff that was really tasty I used to go for. I used to eat a lot of ice lollies and all because it just used to cool my mouth down, because it tended to burn my mouth I used to get mouth ulcers and they used to give me the Cocyl mouth wash for my mouth. That were the only thing, these are just the side effects of the chemotherapy. It just affected my nose and my mouth, my throat a little bit. 
 

Many people said they felt tired after chemotherapy and didn't have the energy for their usual daily activities. Despite being desperately tired some found it really hard to sleep, which of course gets even worse if you worry about not sleeping. Some had to pace themselves or take naps during the day. One woman said the fatigue was even worse than when she was a new mother and working full-time. A few of the people who had been treated several years ago said they had never regained their full strength or stamina.

 

The fatigue crept up on her during chemotherapy treatment - towards the end felt she could sleep...

The fatigue crept up on her during chemotherapy treatment - towards the end felt she could sleep...

Age at interview: 40
Sex: Female
Age at diagnosis: 34
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And all this time you kind of, the fatigue is creeping up on. You look back and you don't realise it at first, and then you look back and you realise how tired you're feeling. And I can remember that last month of going up to London on the train, it would take me ten minutes to walk down the platform. And anything indoors was such a big effort. 

It was very hard, the fatigue at the end was, that last, I think the first, I started in the May, the chemotherapy, and for those first two months really, the first six weeks it was fine, it was just the sort of the bad taste, nothing tasted very well. And I didn't really have any sickness, I didn't feel sick, I just felt odd, I felt weird. And I remember I used to come home and I'd go to bed and I used to kind of, you know, I'd want to curl up and hold my head. But I didn't feel ill, I just felt I could sleep for a thousand years, it was just pure, pure tiredness, pure tiredness. 

 

Went on a school walking trip and managed all the walking, was very tired and hadn't realised how...

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Went on a school walking trip and managed all the walking, was very tired and hadn't realised how...

Age at interview: 41
Sex: Female
Age at diagnosis: 11
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My energy levels I did find were quite affected. I remember I really wanted to go on a school trip to Wales. And we were doing mountain climbing and they were all very, 'Are you sure you're going to be up to this?' And I desperately wanted to be exactly like the other children, and I said, 'Yes'. And I remember after about three days of sort of walking and doing some, quite sort of severe hill climbs really feeling very tired and washed out, and the teachers saying, 'Do you think you're going to be able to finish doing this?' And I was adamant I was, and I did. I managed to stay and finish this course. But it was very tiring. I didn't realise quite how much my energy levels had been affected until I attempted to do this sort of holiday with the other children from school. But generally I think because, as I say, I was unaware of the severity of it I kind of felt that I could do anything. And I kept soldiering on and being equal to all the other children as much as I could in most aspects of my childhood.

Some chemotherapy drugs damage nerves causing tingling or numbness in the hands or feet. People sometimes found that their skin became discoloured or thin and sore. Others said their nails stopped growing or became discoloured, split or fell off. A few said their bones ached, others had headaches or 'a thick head', light-headedness or 'dopiness'. Some had pain along the vein where their chemotherapy drugs were injected. Coloured drugs such as daunorubicin (Adriamycin) also temporarily discoloured the urine. However, a woman who described a sensation of being prodded with the blunt end of a knitting needle welcomed this as a sign that the chemotherapy was 'zapping' her tumours.

 

Explains why chemotherapy causes tingling in his toes and why he is willing to put up with it.

Explains why chemotherapy causes tingling in his toes and why he is willing to put up with it.

Age at interview: 45
Sex: Male
Age at diagnosis: 45
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But as you get towards the end of treatment, like I am now, some of the side effects which might indicate a need to reassess your treatment to see whether you need something else, and in my case it's tingly toes, which is due to what's called a peripheral neuropathy, which means damage to the small nerves that run down to the edges of your body giving you numbness and tingling, and what have you, that starts progressively in your toes and works up. I've had that the last couple of treatment cycles. But I'm aware that the alternative drug to vinblastine, which is the culprit in this particular case, does have a significant risk of secondary cancer in your sixties and seventies, so I'm more than happy to put up with the tingly toes and I certainly don't want to change horses at this stage. I think the last three treatments I can put up with because actually the tingling does improve in the second week after you have a treatment, so I'm quite happy to put up with that for now.

 

Describes how he relieves his aching legs and the pain in the arm where the chemotherapy drugs...

Describes how he relieves his aching legs and the pain in the arm where the chemotherapy drugs...

Age at interview: 45
Sex: Male
Age at diagnosis: 45
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Anyway the second week of the treatment cycle you tend to ache a lot, and I think this is because chemotherapy, as well as depriving cancer cells and building materials, also deprives your body of the raw materials it needs to repair itself. So if you mow the lawn or you go for a walk up a hill, then the night after you do it you'll wake up, probably at two in the morning, with tremendously achy legs, and that can be a big problem with sleeping. So I found three ways of combating that. 

First, where you're actually resting on the bed is painful, so if you get a light summer weight duvet with a low tog value, roll it over, double duvet, so you've got it sort of in half, then pop it under the sheet, between your sheet and your mattress, then you'll have enough padding so that where you're actually lying on the bed is quite soft and doesn't actually hurt. So that's the first thing. 

The second thing is if you wake up in the night at about three o'clock, your paracetamol that you take at bedtime, because you know you're going to get this, will wear off after about four hours. So if you have a glass of water and a couple of paracetamols by the side of the bed then you can just slosh them down. And the capsules are the best because they work faster, and then you can get back to bed and back to sleep within about twenty minutes. 

And the third thing, which I found works extremely well, is that you get a hot water bottle, absolutely wonderful, pop a hot water bottle under the bed clothes, not in contact with you but just to actually make a lovely warm sort of igloo from your waist down, and you'll find that the aching is much, much better. And I found that that has revolutionised my sleeping habits, I now get a lot more sleep because everything is warm. 

Now other things that happen with ABVD, something, probably the most nasty side-effect of ABVD is to do with this Harry Potter business about the drugs being kept dark, because the stuff is actually quite caustic and it does actually rot your veins, so you get a nasty sort of ache that goes all the way up your veins from exactly the point where they put the drug into you, about up to your arm pit. And it comes on almost exactly six days after a treatment. Very odd, because if you just tap the vein on your arm after treatment, then you feel nothing, but after about six days the whole things gets inflamed and because the pain is going up into your spinal cord through what's called a sympathetic nervous system, it has a very nasty nagging quality to it and it also tends to propagate down your arm into your fingers if the drip site is too low. So I've learnt over the months that the higher up your arm they put the stuff into the less of your arm is affected by the pain. And it is bad enough to keep you awake, and I've actually laid awake till about four o'clock in the morning due simply because I couldn't get my arm comfortable. 

And again local heat does work, so I recommend a wheat bag for the affected vein. If you get one of these wheat bag things and pop it in the microwave until it's nicely warm but not too scalding, and then you just literally rest this thing over where most of the pain is, because there's usually about six inches that is the most painful part, and then you can sort of drape that on there and the pain sort of melts away after about five minutes and then you can go to sleep. You tend to wake up when you want to turn over, and just replace it somewhere else. And one or two nights I've had to heat the thing up two or three times, but it does actually help because I think that is probably the most debilitating thing, if you can't sleep. Chemotherapy doesn't seem to make you tired, of itself, it just stops you sleeping, which makes you tired, and that can be quite a nuisance. So unless you can sleep in and there isn’t too much noise and things where you are, and you can sleep in during the day, then it is nice to be able to get to sleep during the small hours so you can do more the next day.

A few people mentioned constipation or diarrhoea as a problem and tried to achieve a balance between the two by adjusting their diet or taking laxatives. Some had indigestion, others hiccups. A few people's lungs were damaged, causing breathlessness. In one the eyesight worsened. Some experienced forgetfulness, irritability or depression.

 

The chemotherapy regimen ESHAP affected her mind and made the whole world seem an ugly place.

The chemotherapy regimen ESHAP affected her mind and made the whole world seem an ugly place.

Age at interview: 48
Sex: Female
Age at diagnosis: 45
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So to start off with I had to take the lovely ESHAP for two courses, which is to my mind the nastiest chemo I had. I had three types of chemo in my treatment, this middle one I hated, I really hated the way ESHAP made me feel. No it didn't make me feel sick, because I continued to eat through it, but it just, I don't know, it just sort of just made everything feel awful, it made the whole world seem an ugly place. And so I found a lot that not only was I physically affected by the chemo but I was very aware of the things it did to my mind, and that there were quite a lot of personality weirdnesses going on, which is something I don't think anybody tells you about. I think we're all told about, warned about the physical side effects, but nobody actually says, 'It's not you', that actually some very weird mental stuff happens. You're being poisoned and I think that's something we all forget about because we're concentrating on how chemotherapy is going to cure it, but actually we're being cured by being poisoned, and of course we hallucinate in the process. 

 

The chemotherapy made her depressed so one of the drugs was changed for the final treatment.

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The chemotherapy made her depressed so one of the drugs was changed for the final treatment.

Age at interview: 66
Sex: Female
Age at diagnosis: 61
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That treatment was, one doctor said, 'It's like eating Smarties'. I thought it might be quite easy but it wasn't, it made me sick. And one thing I realised it made me depressed, which I never, that experience I never had in my life, that depression, I didn't know what depression was. And when I had depression it was really frightening. I was thinking of all sorts of things, bad things. And after the three treatments I was asked to have another CT scan. It takes a few days for the result to come back to the doctor. By that time I went back for the fourth treatment and I asked the nurse, 'I want to see the doctor as well when I went to have the treatment, prescription'. So she came to see me and I said, 'I'm really, really depressed, I can't cope with it'. By the time I had three treatments, the first one was OK and the second one very bad and the third one was worse. So I said, 'This is worse'. She said, 'Stop the treatment because your CT scan shows the lumps have dissolved', or whatever, 'shrunk'. 

Then I thought that, 'As I'm here I'll have the fourth treatment as well'. I asked her, 'Will it do me any good?' She said, 'Yes it will, it might prolong it coming back'. So I took that treatment but she changed some tablets which she thought were going straight to my head, not in the body, those are the ones which were making me depressed, so she changed them. So I had the fourth one as well. So far I feel alright. 

So many different medicines (such as anti-emetics, steroids, antibiotics, anti-fungals, painkillers, mouthwashes) can be given to counteract the unwanted effects of chemotherapy that several people had to take up to 20 tablets at a time. Patients given a new treatment were closely monitored in case they had an allergic reaction. 

 

Had to take so many different medications with her chemotherapy that she felt her life was...

Had to take so many different medications with her chemotherapy that she felt her life was...

Age at interview: 61
Sex: Female
Age at diagnosis: 60
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The worst bit was the' when you'd had the treatment for about a week, you had a complicated regime of medication and the pharmacist went through it and said, 'Oh that mustn't be taken with that and that mustn't be taken with milk' so for that week, one week in three, my life was completely regimented, and I hate fussing about food and fussing about hygiene and things and I had to sort of write out the order of my day, so' take this, half an hour later take that, don't have any milk until two hours after that, have the mouthwash regime at this time and then half an hour later the second mouthwash and it was really tedious and went against the grain but I followed it slavishly because I thought the only way to get better is to do exactly what they say. 

 

Was terrified by an allergic reaction to her first dose of bleomycin so an antihistamine was...

Was terrified by an allergic reaction to her first dose of bleomycin so an antihistamine was...

Age at interview: 48
Sex: Female
Age at diagnosis: 45
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So we had the first, so all the bits and pieces and everything was attached and you'd got your needles with the orange stuff and the drip bag with the other stuff, and so all the paraphernalia happened and I had it all pumped in, and just as we were about to leave I went into my first hyper. And the sugars and the shakes and all the rest of it started and I was having a really bad reaction to the bleomycin, as it turned out. But of course one didn't know, it was absolutely terrifying, so stuff was pumped into me but couldn't be pumped into me because, crazily, a doctor has to be present for them to, so the nurses knew what to do but they couldn't do it until there was a doctor to sign off on it, and there happened to be nobody in the unit at the time. It was really scary and it wasn't helped by the registrar coming along and saying, 'Oh I've never seen than happen before'. Great! You know, here I am, another perfect learning opportunity for everybody. 

And it's also in that period, it is such a scary time because being the first diagnosis you just don't know, you know you've got this terrible disease and you know you've got a disease that can kill you. So everything that happens is terrifying, anything that goes slightly wrong, slightly deviates from what's being predicted, scares you stupid. I mean I think further down the line you work out that no two patients are the same and that medicine is not an exact science and it's all totally unpredictable and you've just got to roll with the punches. But when the first punch hits you it's not easy. 

So after that little drama we knew what to do, so after that when I was having my treatment we knew that I had to have, I guess, some sort of anti-histamine to stop me going into the allergic reaction, so there was an extra needle to be counted before treatment commenced every fortnight.

Chemotherapy damages the bone marrow causing a shortage of blood cells in the body. Shortage of white blood cells called neutrophils (neutropenia) increases the risk of infection, and shortage of red blood cells (anaemia) causes tiredness and headaches. Some people had a treatment postponed to allow the blood cell counts to recover or were given medication or transfusions to boost them, others caught infections (see 'Infections during and after treatment'). Certain chemotherapy drugs can also damage fertility (see 'Treatment-induced infertility').

Last reviewed February 2016.


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