Most cancer treatments damage healthy cells as well as cancer cells; this is the main cause of side effects. Side effects vary depending on the treatment used and everyone reacts differently. Chemotherapy targets rapidly dividing cells, hence the lining of the mouth and digestive tract, the hair, skin and bone marrow are all affected. Radiotherapy damages normal cells in and around the treated area. Biological therapies may also cause side effects. Most side effects disappear within a few weeks of treatment finishing.
Leukaemia treatment often involves having several types of drug at the same time, possibly in combination with radiotherapy, so it can be difficult to know which treatment is causing what side effect. Side effects from high dose chemotherapy or total body irradiation (TBI) given in preparation for a stem cell transplant are more severe than those from standard chemotherapy or radiotherapy regimens.
Chemotherapy and radiotherapy can cause tiredness making people feel weak and lethargic. Frances felt ‘tired to a level that I never thought was possible’. Some had difficulty sleeping at night despite their tiredness, or found even reading too much effort. Some people said that the tiredness they felt during treatment was the same as the tiredness they had felt beforehand. Tiredness could persist long after treatment and some people had to adapt their lifestyle.
Ian became an occupational therapist after retiring from the police. He is married and has two children aged 16 & 14. Ethnic background: White Welsh.
Fatigue - very much a factor. Absolutely shattered, constantly absolutely shattered. A big lesson, had to change my lifestyle completely for a while, and take down-time, afternoon naps, watching television became a big part of my life, silly things like Diagnosis Murder, I mean I can’t watch it now on the telly, Dick van Dyke, because it just reminds [me] of where I was. And I laugh about it, I’d quickly change channels because I used to just watch them because I just needed to be relaxed and calm because I’d get tired.
And then I’d have my walks. Bonus, plus side of me resting was that I’d have a walk in the fresh air, come back and have another rest. And I had to learn to deal with that fatigue, accept it for what it was. Because I did pride myself on being a fit young man, or fit middle-aged man, or whatever I was, I’m not sure, but I was still playing football, still playing squash and badminton and still very active, and so I had to really back out of all of that big style, yes. But the fatigue, the sickness, the diarrhoea, yeah.
The digestive tract
Nausea and vomiting associated with chemotherapy can usually be reduced or avoided with anti-sickness drugs. Some people had expected to feel sick but were pleasantly surprised when they weren’t; several felt nauseous but did not vomit.
'Ace' is a retired musician. He is divorced with no children. Ethnic background: Black Irish/American.
I haven’t been sick with it at all, which is incredible. I mean I had my own room, and people next door to me were always in a terrible state, being sick all the time, and it does affect people like that. But I was fine. I was really fine, great, you know. They give you a sickness tablet before you have your chemo, and also why I used to take some home with me and I used to have one when I had my breakfast in the morning plus what I’ve got to take my tablets in, to get a lift down to the hospital, you know, the ambulance pick you up and then they gave you another one, so it was a safeguard. But I wasn’t bad at all, which is incredible. Even with the heavy chemotherapy I wasn’t bad, which was incredible, and everybody else was sick, you know, which is not a very nice thing.
Oral chemotherapy causes only mild side effects and some people managed without anti-sickness medication. On rare occasions hospital staff forgot to give the anti-sickness drugs, causing vomiting. Some found the anti-sickness drugs didn’t always work so they vomited occasionally. Ian said it took time to find the right dose for him. John found anti-sickness injections more effective than tablets, and that they worked best shortly before eating.
Dianne is a retired HR director. She is married with no children. Ethnic background: White British.
So other side effects you mentioned were sickness, nausea.
I was very fortunate, if I tell the story, I only had one dose of appalling sickness and that was because I was given my first chemotherapy at a shift change-over, and they forgot to give me any anti-nausea tablets. So I can’t describe the degree of the nausea. I’ve never experienced anything like it and it’s absolutely horrendous. It’s not like anything anybody’s normally being sick, it’s fifty times worse. And the staff nurse came to me the next morning and said, ‘Dianne, we’re really, really sorry that you’ve had this problem but you weren’t given your anti-nausea.’ And I could have hugged her because I was so grateful that she told me the truth because I thought if I’m going to be as sick as this every time I can’t do it.
Treatment with the biological therapy alemtuzumab (MabCampath) made Glyn feel sick – he vomited in the car on the way home. People taking imatinib (Glivec) for chronic myeloid leukaemia (CML) were advised to take it with food to avoid nausea. Having initially felt sick after taking it in the morning, one woman subsequently took it at bedtime.
Some people had diarrhoea as a side effect of chemotherapy. Elizabeth 'lost all her dignity' when she didn’t make it to her commode in time. One man was horrified when the nurse asked for a sample. ‘Ace’ wasn’t sure whether his diarrhoea was a treatment side-effect or due to a bug circulating in the hospital. Some people had painful constipation, others indigestion.
Deb is a business consultant. He is married with two children aged 10. Ethnic background: Indian.
But that was the fifth chemo and that pre-transplant period was absolutely terrible for me. And suddenly the doctors found that there was the severe pain in my stomach and the lower belly. They took me to a different, endoscopy and other tests then there was I think an MRI scan. They couldn’t look at what exactly what it was, having a high temperature, it was continued for about two weeks, a severe pain in my stomach. Then they thought there might be some ulcer or tumours in my intestine. So a group of surgeons they visited me. My immunity was absolutely zero because I had gone through that high chemo, my white blood cell count was nil. My red blood cell I think was, my haemoglobin was very, very low and there was no platelets in my system. So during that time how to do the operation? It was very dangerous and was life threatening but fortunately the doctors some time they found out it was not something serious. It was just because of this constipation, it was a stool which got stuck in a place.
Painful ulcers or blisters in the mouth and digestive tract were common after chemotherapy or radiotherapy, and people were given mouthwashes and ointments. Morphine was often given to reduce the pain and sucking ice cubes could be soothing. Claire had to spray artificial saliva into her mouth. Dental problems also occurred.
Elaine is a housewife and mother. She is married with two children aged 9 and 10. Ethnic background' White Scottish.
But it was after that because of the radiation and stuff it had burned all the insides and my mouth it filled with thrush. And I mean it was like just my whole mouth was blistered and it was agony. And right down my gullet it was all burned, so it was like oh, it was horrible, absolutely horrible.
And you had that horrible thrush…
…after it too. Did they give you anything to help with that?
At the beginning they gave me mouth washes, but then with my mouth getting so sore, so painful, they just upped the morphine. You know, I was out of it for about a week and a half. And then once the pain started going down and I was starting to maybe have some ice cream or soup or something. They gave you an antibacterial, antibiotic mouth wash with antibiotic in it to kind of help numb your mouth a wee bit to help you take some soup or some ice cream. Just so you were getting something.
So yeah they were really good. If you asked for painkillers you got it. I had really bad heartburn at one point. I was in tears with the pain because of the burning. And they come in with the hot water and peppermint to help, try and help it, which it did help eventually.
Eating is important in aiding recovery from the toxic effects of cancer treatments, yet side effects can make eating difficult. Nausea and vomiting may reduce the appetite and make it difficult to keep food down. Painful blisters in the mouth and oesophagus can make swallowing anything other than soft food problematic. Chemotherapy can also damage taste buds making foods taste metallic or bland and therefore seem unappealing. Even the sight or smell of food can be off-putting.
Hospital staff tried to encourage people to eat. Steroids were used to build up strength and increase appetite and hence weight (see ‘Supportive treatments’). Family and friends brought in home-cooked food or supermarket ready meals, which might seem more appetising than hospital food. Elizabeth refused attempts by the staff to feed her but allowed her mother to feed her soup. Neil had a craving for pizza and asked the nurses to get one, which kick-started his appetite. Aley asked for baby foods.
Brian is a Research Consultant in the voluntary sector. He is married and has two adult children. Ethnic background: White British.
So for the most part it wasn’t a bad experience. I think the teeth were the thing that irritated me most, when the teeth and gums started playing up, and of course the other thing is it does affect your appetite, the chemotherapy. Things begin, you’re not aware of this because it’s subtle changes, but the taste of things does change.
Now, I was eating NHS hospital food, it’s not brilliant, the hospital I was at they’ve got quite a good reputation for the food that they serve. And initially, and particularly on the first cycle, for the first two or three weeks, I was fairly happy with it.
But I began to get fed up with it and I think my taste buds had also changed during that three weeks, that I did begin to find that I didn’t enjoy the food very much and my appetite dropped down. It was quite good in the hospital because they allowed the patients’ relatives and friends to bring food in, and you could get it heated up in a microwave, so you could have some alternative choices.
And that’s the way I got through the first cycle, towards the end I began to eat, the number of hospital dishes that I liked, I think, had gone down to one by the time I got to the last week, but we managed to top up food from dishes that my wife brought in for me and that friends brought in for me too.
Some people didn’t eat for days or weeks. High energy drinks were offered in an attempt to build them up. Nurses told several that if they didn’t eat they would be fed artificially through a tube. This threat made some people eat enough to keep their weight above the critical level; others were less fortunate. Elizabeth said the nutritional fluid felt too rich but it kept her alive. Aley said his feeding tube came out when he vomited.
Ian became an occupational therapist after retiring from the police. He is married and has two children aged 16 & 14. Ethnic background: White Welsh.
A good example of that is that I was struggling to eat. I had very poor diet intake because I just couldn’t be bothered, the food was horrible, or I perceived it as horrible. And one evening two nurses came and sat either side of my bed and they gave me a telling off, a real telling off for not eating and that if I wasn’t careful then I’d die anyway. And not because of leukaemia, because I was wasn’t looking after myself. And I felt like a naughty schoolboy.
I picked myself up from that. It was a bit of a low and a high point, I picked myself up and I started to work on the eating, started to eat and I remember having the pots of, I can’t remember what they were called now, the high energy drinks, starting eating them and the steroid. And to me that chapter was just as important as everything else that went on. It was a really important moment, and two nurses, and I’ll never forget them and all the team, and it worked, just them sitting down that night, after their med. runs, and telling me, to my face basically, ‘Pick yourself up.’ And slowly but surely over those two months I did.
As a result of weakness and eating difficulties many people lost weight and muscle tone. Aley said he lost 23 kilos; his brother who came from Pakistan to visit him was upset to see him so thin. Elizabeth said that the clothes she had worn on entering hospital dropped to the ground when she put them on to leave.
Hair and skin
Hair loss may occur after taking certain chemotherapy drugs or having radiotherapy to the head. The resulting changes in appearance may be upsetting and difficult to deal with (see ‘Hair loss and body image’). Some people taking biological therapies or certain chemotherapies developed a rash; an antihistamine sometimes prevented this. Mike said he was given various ointments but nothing really worked. A few people said skin had peeled off from their legs, arms, back, hands or feet after chemotherapy.
Thelma is a retired waitress. She is married with one adult child. Ethnic background: White British.
So I went home. I came home and was referred to go up to the hospital every week. But when I came home that’s when I had the rough time. Well obviously all my hair fell out, my skin all peeled off on my legs, on my arms, on my back, but not on my stomach, not on my front, where my breasts are and my stomach. No skin peeled there, and nor my face or my neck. But all my legs, my arms, my back, the skin was coming off, just falling off, and all my hair. I had to be carried to the toilet, helped to be showered. Well there was nothing really much I could do for me, I couldn’t do anything. I had a wonderful family. I’ve got a wonderful family.
Yeah, in hospital I was fine. Lost my hair obviously but that was no problem. But when I came out that’s when I started, couldn’t do nothing. Everything, yeah, skin all falling off me.
Did they warn you that any of that would happen?
Well I did expect something, you know, I expected it. Didn’t expect the skin to fall off but I expected to feel lifeless. You know, they were giving me cream for it, to rub in, my sisters used to rub it all over my body. Then when it come off they used to cut my, underneath my feet off, well then it would fall off. And on my legs and that, my skin fell away. I don’t know whether, did I hear of people’s skin? I don’t think I heard of people’s… I know some people are bad on chemotherapy. Mind you I did have a strong dose. I did have a strong dose. I must have done for the effects.
Chemotherapy damages normal blood cell production causing shortages which can be corrected by blood transfusions or drugs that stimulate the bone marrow (see ‘Supportive treatments’). People taking interferon (a biological therapy) often had flu-like symptoms.
Chanelle is a project manager. She lives with her partner and has no children. Ethnic background: White British.
And the side effects were really bad. There was quite a lot of hair loss, a lot of weight loss, a lot of pain in my bones, was very tired all the time, very pale, would get a lot of really intense pains in my joints when I would inject myself in, you know, I would inject myself three times a week in an evening. And I would go through these cycles of feeling very, very feverish and so hot that I would have to sit in a cool bath, and then within thirty seconds that would change to this really intense fever where I’d be so hot, you know, I just didn’t know what to do with myself.
And that would go on for hours of an evening and it was incredibly difficult to deal with and my life changed completely really and, you know, my friends would be going out and doing things and it was even a struggle for me to walk to lectures some days. And also very difficult dealing with physical appearance changes because a lot of people say to you, ‘Oh well it doesn’t matter, you know, you just try to get better.’ But it’s very difficult if you look so radically different to your peers. So there were all these factors.
And we charted the progress of it and in the end it was decided that I was intolerant to this drug and I was switched over to Glivec, the imatinib.
Less common treatment side effects included conjunctivitis, sweats, uncontrollable shivering (rigors), numbness, water retention, muscle twitches or stiffness, and joint pain. Some people having biological therapies or relatively mild chemotherapy experienced no side effects.
None. I’m quite, amazingly, I have to say I noticed none at all. I mean you were warned you might have nausea or whatever but I never experienced that, which is why to me I see it as a miracle drug, in my case, I can’t say obviously for everybody. But it really was, I simply couldn’t believe it. You know, I started to ask, ‘Well, did I really have it?’ But obviously I did.
So you didn’t lose your hair or anything like that?
No no, no impact on anything. Quite extraordinary. Because, yes you’re right, I mean when people say you’re going to have chemotherapy, one of the first things you think is you’re going to lose your hair, and my mine’s quite thick and long and it gets very long. I mean I wasn’t looking forward to that but… Mind you that, actually that’s a point, I don’t think I was ever told that I wouldn’t or mightn’t. Whether this particular drug is one that doesn’t do it, but if that’s the case I think I should have been told, but I wasn’t. But anyway it didn’t happen and, no, life just carried on and gradually I felt better and better.