Chemotherapy for leukaemia damages blood cells. White blood cells are needed to fight infection, so a shortage of white blood cells (neutropenia) makes people vulnerable to infection. The blood cell count is usually lowest from 7 – 14 days after chemotherapy but this varies with the drugs used. The blood count gradually returns to normal as the bone marrow recovers but some people have blood transfusions or growth factor injections to boost recovery (see ‘Supportive treatments’).
Any patient who is being treated with chemotherapy is at risk of infection. The risk depends on the type of chemotherapy being given. However, any illness, with or without a raised temperature, in patients treated with chemotherapy should be taken seriously and medical assistance obtained.
Infections were common during intensive chemotherapy or after high dose treatment given before a stem cell transplant. For one man it followed treatment with MabCampath, a biological therapy. Types of infection included influenza, pneumonia, septicaemia (infection of the blood), shingles, Clostridium difficile (C.diff), a fungal infection of the lungs and an abscess on the leg. Symptoms were: breathlessness and chest or back pain (pneumonia), diarrhoea (C.diff), rash (shingles), fever with ‘rigors’ (a kind of intense shivering), nausea, vomiting, and just feeling ‘not quite right’.
Neil is an accountant. He is married with 2 children aged 17 and 15. Ethnic background: White English.
Yes. Septicaemia, the first time I got it I can remember as clear as day because my neighbour, another of my neighbours, had come down to visit. And he’s a very, very bright, erudite man and very quiet. And he’d come to visit me and he’d brought some magazines. And it was the Saturday before Christmas and I appreciated him giving up the time at that time of the year to come and see me. And he’d been there about half an hour and I just turned and said, ‘I’m sorry I’m going to have to ask you to leave.’ And I literally, those were my words. He looked at me and I said, ‘I don’t feel very well. It’s nothing to do with you. I’m just going downhill.’ So, ‘Fine. Okay. No problem.’ And off he disappeared. And it was just something inside me wasn’t right, is all I can say. And that was at about three o’clock. By nine o’clock that evening my temperature was high, I was up at a hundred.
I didn’t realise what was septicaemia was, or the significance of septicaemia. You’ve heard about it. You know that you’ve read stories of somebody might have died about it, but that’s other people, it doesn’t happen to you. At two o’clock in the morning now my temperature was well over a hundred and four and I was so low I couldn’t actually reach to pull the call to get them to the bedside. So I’d waited and I’d sweated through and gone through and by the time I actually got the strength and the temperature down, the strength to pull the thing, I was down at about a hundred and three, when all hell broke loose and I was not in the good books. And then it’s straight onto antibiotics and everything else to kill off the infection. Because that’s really what it is, it’s an infection in the gut in the body.
But because of how virulent it is, and how fast-acting it is, that’s why they’re glad to have you in hospital. But what it meant was that I learnt from that, so when the next one attacked me on phase two I was at home, and again I was meant to be going to see something at school and I said to my wife, ‘Look I don’t feel up to it.’ And when she came back in the late afternoon, early evening, she said, ‘How do you feel?’ I said, ‘I think I need to get back to the hospital.’ And again it was the onset of septicaemia again and it’s just because your body defences are so low, and often when you’re out for a period of time after your first course of treatment it’s in that.
They’ve finished giving you the drugs, the drugs are having their effect so you’ve gone neutropenic i.e. you’ve got no defences. But there’s nothing they can do and they’re just waiting for your defences to come back, and that’s the time when you’re likely to get, or certainly in my case, hit with whatever it was that’s going around.
The severity of the infection varied. Some people didn’t feel particularly ill and only spent a few days in hospital having antibiotics. Others felt completely wiped out and were laid low for several weeks. Some feared they might die. Claire said she felt a sense of panic among the professionals around her; her best friend sought reassurance from a nurse but got none. Neil’s wife stayed overnight in the hospital once when he had septicaemia. When Brian had diarrhoea from C.diff. He lost his appetite and two stone in weight. He had to be moved out of his hospital room so it could be thoroughly cleaned.
Brian is a Research Consultant in the voluntary sector. He is married and has two adult children. Ethnic background: White British.
The other thing was that one morning I woke up and I felt a pain in my back, and it was like a stabbing pain and I told the doctor about this and, a bit uncomfortable, anyway they did an x-ray and they discovered that I had a slight case of pneumonia, again, which is, I think, a common side-effect, if your immune system is knocked out. Again, this is something that sounds quite worrying initially, pneumonia, you know, that sounds quite serious, but in fact they put you on strong antibiotics, again, it’s not tablets, but it’s injections they give you, and all through the line, and it took about a week to clear up.
The only trouble is, I got this pneumonia almost at the end. It should have lasted four weeks, this cycle of chemo, and my blood count should have been recovering after four weeks, and, as it turned out they were, but the pneumonia came just about the end of the four weeks, and they kept me in for another week as a result. So in the end I was in for five weeks on the first cycle.
But if things go well normally each cycle of chemo in this particular instance is four weeks, in the hospital, in this room, being treated, which is quite a long time. And you do begin to feel institutionalised a little bit after you’ve been looked after for four weeks, with everybody giving you lots of attention.
Again, although the pneumonia sounded serious, I didn’t actually feel too bad. I felt a little bit rough for a few days, but the antibiotics sorted it out, and it didn’t stop me watching the television, doing my work, using the hi-fi and so on, and seeing visitors, I felt pretty reasonable throughout.
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Deb is a business consultant. He is married with two children aged 10. Ethnic background: Indian.
There was a time when my temperature went up to 39 degrees Celsius and in the night nothing was working and the doctors and nurses on the night shift they were very, very upset. They were very, very worried. They called other doctors and then they decided if the temperature goes up another degree then probably this guy is going to, we won’t be able to save this guy.
So they were talking all this and then I was listening to everything and then I said, “So can’t you have any medicine? What the hell are you doing? So what sort of doctors you are? Don’t you have any cure?” They said they can’t. So I remember that in that time also I was literally shivering but they stripped me off and then put me on a lot of ice to reduce my temperature. It was like I was shivering, I was shouting, “Oh, I can’t.” Because I think I was literally shivering with it. They put me down and then wrapped me with an ice blanket and everything. So it happened.
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Michael is a semi-retired university lecturer. He is married with 3 children aged 15, 17 and 25. Ethnic background: White British.
And I remember also it was my daughter’s graduation a couple of days later and it was pretty hot and I was determined to go to that but I really didn’t feel very good at all, but I went. And then on the Friday, I can remember this, the following day I decided, I spoke it over with my wife and we decided that I’d better go and get checked out. So I went to the hospital, I went in through A & E, and I was breathing with a bit of difficulty and I had sort of slight chest pains as well.
Anyway, I went to A & E and they said, “Well, we think there’s something on your lung, we think you might have something there and we’d better admit you.” Anyway, it turned out I had pneumonia and it’s quite likely that this was a consequence of the Campath. Anyway they hit me with some very heavy antibiotics but it just had no effect at all, and I went in on the Friday and by the Sunday I was in very serious trouble and they said that I would have to go into intensive care, it just wasn’t responding at all. And I remember this experience is etched on my memory for all time really. And I can remember lying on the bed and I could hear the doctors discussing me and it was bad news, I could tell that much. And in fact they said that I would have to go on a ventilator. It was the only hope I had. And my wife was told I had only a three in a hundred chance of living.
Anyway, I was in there for a couple of days and then I rallied a bit and they were able to take me off the ventilator and put a tube through my throat, a sort of tracheostomy thing. But even then I was not out of the woods. And I can remember also before I went into intensive care just saying to the doctor, “I just want to go home.” I thought I was going to die. And I just wanted to go home and die at home. Anyway, she called my wife in and persuaded me to stay in.
Anyway, I was able to slowly and steadily recover and that was the time when I suppose the will to live was very important, and family, I mean that was the time when my family were supportive. Because it was a difficult time, the children had come in and I’d said the final farewells and so on before I went into intensive care. But I did pull through but I was in hospital for three weeks and I had to learn to walk again. I mean it’s a whole week, once out of intensive care I recovered very quickly.
Many people received their chemotherapy and other treatments intravenously through a central line (e.g. Hickman line) to avoid repeated needle punctures. Despite frequent and thorough cleaning, by staff or patients themselves, central lines were a common source of infection and often had to be taken out.
Michael is a retired charity director. He is married with one adult child. Ethnic background: White British.
So I think probably five weeks after I’d gone in for the transplant I was discharged from hospital in February 2005. I was very weak at that point. And within a couple of days I started to feel still weaker. And at one point I was due to come in I think for a blood test, which I was having every day or every second day in the outpatients unit of the hospital. And when I got to the street entrance to the hospital I had to call ahead to the outpatients room because I wasn’t sure that I was going to be able to walk that distance. And they took a very quick look at me and decided that the Hickman line that I mentioned right at the beginning of this was now harbouring quite a severe infection, something that had been hovering around me at various points through this, so they had to remove the line in a hurry. I was rather sorry to see it go. The great thing about the line is you don’t have a new needle in every time a blood test is taken, and when your blood is being tested at least daily, as well as things going in the other direction, having the line is in a way quite reassuring.
But we got over that. I was back in hospital for three or four days in a ward which was no longer an isolation ward, and after the privilege of having a room to oneself I actually found it rather harder for those three or four days when I was at a pretty low ebb in those surroundings. So given heavy doses of antibiotics and discharged.
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Kelly is a sales executive. She is married with two children aged 12 and 6. Ethnic background: White British.
Did you have infections with your Hickman line?
Yeah. I had about three. And one time, it was about a week before I was due to have it taken out, and I was quite ill and had to go back to hospital, just the general admissions unit at my local hospital, not the one where I was treated. And they didn’t even know how to clean the line. They didn’t even know the rules of one dirty hand, one clean hand, and I wouldn’t let them touch me. And my consultant who I’m still seeing, he knew me from when I was eighteen when I’d had the blood disorder, which is why I had steroids and bone marrow taken out when I was eighteen, so he’s known me for years. And there was a young doctor on and I wouldn’t let him treat me because he didn’t know how to do my line, and so he had to phone my consultant, and my consultant says, ‘Who is it?’ And he says, ‘Kerry’. And he went, ‘Just let her do it’, because he knew me, obviously, and he knew that I’m quite capable. I remember being freezing because you feel so cold and my lips were blue because I was freezing, dithering and I was thinking ‘They ain’t keeping me in this hospital.’ So I went to the toilet to warm my hands in the sink with the hot water, and I went back and she went, ‘Are you cold?’ and I went, ‘No. I’m fine’ So I had to keep going to the toilet to warm my hands, which is not a good idea really.
Some people were in hospital when they developed an infection; others had been discharged home either for a break between courses of treatment or after treatment had finished. Raised temperature is an important sign of infection, so those who were at home had been advised to monitor their temperature daily and to return to the hospital if it exceeded 38ºC (100.5ºF).
Jeff is a retired parcel courier. He is married with three adult children. Ethnic background: White British (Welsh).
And on the fifth day of the eight courses of chemotherapy I caught a chill and had a rigor and as a result I had to go on intravenously-fed antibiotics and I had to spend an extra five days in hospital, so that meant a fortnight.
I came out of there feeling very ill and very weak and I was home for five weeks and I improved tremendously. And had a random test down in [name of city] they put my name on a computer and pressed the button and it said that I must go back in for another five courses and that would be the end of it, which I did. And on the third course of chemotherapy I had another rigor and I caught an infection and again I had to be put up on an intravenous drip of antibiotics. Well, I spent an extra five days in hospital. On coming out of this lot I was absolutely floored. I was ill. I felt on, like the first lot I went in, that I was going to die. I was so ill.
How many times did you have those infections with the rigors?
On the second visit and on the third.
How long did those episodes last?
Over a period of three days I had to be put on I.V. antibiotics for five days. I had to be put up because if I had come home and caught an infection I’d have to go straight back. I’d not to go and phone up any other hospital. I had to go straight back into that hospital where they treat me straight away, because they explained to me that if you do get an infection remember you’ve got nothing to fight it and if you don’t come in you’re silly. And I had to have my temperature taken every day, and if it was above a certain amount I’d have to inform them. But if it was above a certain amount I’d have to take it in an hour again. And if it was still there then I would have to take steps to go back to hospital.
Getting infected meant having to stay in hospital for longer than planned or having to return to hospital. The next course of chemotherapy or other treatment was often delayed until after the infection had gone. Most infections were treated with antibiotics, often intravenously. Thelma was also given oxygen when she had pneumonia. Claire had to travel an hour and a half each way, every other day, to another hospital for injections of an anti-fungal drug for her lung infection.
After successful treatment for an infection, some people were given antibiotics to prevent future infections or to take at the first sign of infection to avoid treatment delays. One man’s dose of preventive antibiotics was increased after a bout of shingles.
Oral chemotherapy for chronic lymphocytic leukaemia (CLL) is relatively mild, and less likely to lead to infections. However, people with CLL or myelodysplastic syndrome (MDS) who are on ‘watch and wait’ may be at increased risk of infection because of the condition itself, in which the white cells may be defective. Several people had taken precautions, such as limiting their contact with people who had colds, by restricting their social life, avoiding public places, and cleaning their hands with alcohol gel after contact with others. These precautions, whilst sensible, should be balanced against the need to maintain as much of a normal lifestyle as possible.
Glyn is a retired management accountant. He is married with two adult children. Ethnic background: White English.
Okay. So tell me a bit about how this illness has interfered with your other activities you might have done since you've been retired.
Glyn' Well, the big thing really is the social life because, as you can imagine, being the golf club treasurer I had a big social life at the golf club, because our main friends are golfers, so there’s another four, there’s five of us, aren’t there, in the, so there’s ten people. And we’d always go to, they had a dinner and dance, the candlelit dinners and things. Anything that was on really we’d go to. And then of course I stopped that dead. I mean you’ve been to one or two, and probably more lately, but I stopped that totally. I just wouldn’t go anywhere where there’s a lot of people because it frightened me to death that I would catch something. And with having that month in hospital in January 2007, I would never want to go through that again. That was just horrendous, so I thought, "I’m never going to get anything again like this, so I will do everything they say”, and so, as I say, I’ve not done that.
We’ve got a caravan in Wales and we go to that. We used to go for meals and I stopped going for meals there and said we’d only eat in the caravan. And we used to go for a drink at the bar there and I wouldn’t do that. And as a matter of fact I think with all this treatment I just went off alcohol anyway, so it didn’t worry me that one.
And we stopped playing golf as well. And I mean when I’ve played a few times since, for instance, my son comes up and we go out and have probably eight or nine holes. But I’ve got nothing like the strength I used to have. I keep wondering whether I ought to go, in the church raffle last year I won a month’s Fitness First membership, and I don’t know whether to go to boost my arm strength, but I never bothered really. And so I don’t go in competitions or anything at the moment. That might change now mightn’t it? Yes, especially as I’m getting some immune system back I feel I could try that again. And we’ve started to go to a few more. We go to dinners with the ten of us. But I mean unfortunately we were supposed to be going last Saturday, and there was no way on earth could I have gone then.
Pat' I think the other main area that it’s really affected is holidays, because we travelled abroad. We loved going abroad on cruises. We had a three week holiday in America booked which we had to cancel. And I think we’re very nervous about looking at booking ahead in case Glyn’s immune system drops again. And I don’t really want to go on a plane because that’s one of the big places where you pick up any infection.
Glyn' Yes, fear isn’t it, the germs floating round the plane. Horrendous really.
Pat' And the same with the cruise because you’re in a confined area, so if somebody has got the norovirus everybody get the norovirus, so we’ve restricted ourselves to UK holidays.
Glyn' We’re in a thing called Holiday Property Bond, and so we just go to UK places like St Bride’s Castle we went to, and Henlys Hall in Anglesey. Barnham Broom we went down to didn’t we in…
Pat' Down in Norfolk.
Glyn' …for our wedding anniversary last year but yes, we’re just doing that. We’ve booked the lake district this year.
Pat' I think it does affect your social life a lot. It would affect work life to
Other treatment complications
Another common complication of leukaemia treatment is damage to egg or sperm production, causing infertility. This is described in detail in ‘Treatment-induced infertility’. Some people who had received a donor stem cell transplant later developed a complication called graft-versus-host-disease (GVHD) involving a skin rash, diarrhoea and vomiting, or jaundice (see ‘Remission and recovery from treatment’).
Various other less common problems occurred among the people we spoke to. Some had allergic or other types of adverse reactions to particular drugs, such as biological therapies, anti-sickness drugs, immunoglobulin treatment, blood thinners, and a preservative added to harvested stem cells before freezing. Others developed a blood clot or deep vein thrombosis (DVT) as a result of inactivity in hospital and were treated with blood thinners such as heparin, clexane or warfarin. A few people had a serious bleed during treatment while they had very few platelets in their blood, which are essential for clotting. One woman developed piles which had to be removed surgically. As a result of having multiple blood transfusions, Elsa ended up with too much haemoglobin, requiring further drug treatment. A few people developed diabetes, jaundice or cataracts as a result of treatment.
Elizabeth is a retired NHS administrator. She is married with two adult children. Ethnic background: half French Mauritian, half White British.
I started [imatinib (Glivec)] on the 6th of December. About the 17th of December I started getting a very high temperature and a rash. I was covered head to toe in a red angry rash and I was hospitalised. And this drug was so new, nobody knew really what it was, and I sort of guessed that it was the drug, obviously, doing this to me. I knew it wasn’t the disease. But I had a such a high temperature it really worried me what is going on here, and then I had to stop the drug of course. And I thought, “Right, only one solution. American professor.” E-mailed American professor and said, “Look, I’m in hospital, got a high temperature, covered in rash, nobody knows what to do with me. What happens?” And he actually sent a protocol to deal with this to the team at the hospital and they started implementing it. Amazing how you have to treat yourself eh? And then I started getting better. I was discharged and I had a short course of steroids to deal with the rash. Glivec was introduced gradually and I was back on the drug. Okay. Sorted again. Problem over.
So then the new cells, my cells arrive, and basically this now in turning from having a chemo protocol into an autologous transplant and I get my own cells back. And I knew I would be okay then. I knew with my own cells my marrow would start. I just knew it would happen, so there was, the panic was getting better now and I was okay. So then they start injecting the cells in my line. The cells had had to have preservatives in them because of being kept since 1999. Then I start having palpitations, blood pressure drops, back on bed, boomph, you know, and stop, and what’s going on? And I’m saying, “I’m having a heart attack.” And so anyway, we restart the whole procedure and they have to give me Piriton so that I would not have such a reaction to the preservative that was actually in the cells.
Then we start again and I still get a bit of the symptoms but certainly not as much as that first time. So that was a very unpleasant experience. I didn’t like it really, and all the way through the cells were going through, I didn’t feel right. I was still feeling I was having palpitations and I kept thinking, “I can’t breathe.” And it wasn’t comfortable.
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Jeff is a retired parcel courier. He is married with three adult children. Ethnic background: White British (Welsh).
Okay. Tell me about this awful brain haemorrhage that you had. How did that come about?
It came about, according to the neurosurgeon, as a result of the aggressiveness of the chemotherapy that they were giving me in this AML16 [trial]. And I was told this before I went into hospital that what I was going to have would be aggressive, and if there was any weak points it could find it. And the worst part of it all, it was a double bleed running against one another. And if it met it could have expanded and burst further causing perhaps my death or brain damage.
And they rushed me down to the… I don’t remember anything about it. Apparently I was delirious. And one of my children was there and he was very upset, one of my twins. They did the operation and I came round in another ward where I was recovering overnight, and within twenty four hours I was back in my own ward. And my head was covered in steel, all these steel things they clip onto you, over your head to cover it. And I was like the tin man, and it was amazing.
And I hadn’t shaved and I had lost four stone in weight from the time I went in until I got back, which was, I would say, in ten days I’d lost four stone in weight. My legs were so thin and I was always fifteen stone, not big big but I wasn’t small. And when I saw myself in the mirror I thought, “God, I’m going to die.” I had jowls down my throat here and I hadn’t had a shave and my beard and my whiskers on my face were growing and this thing on my head. I looked absolutely ghastly and when Joyce came down with my watch, I could put almost my wrists and my arms were that thin. I had lost body weight. My legs were all thin and skinny. I’ve never been like that and it was not nice but, as I said, they did the job and I bounced back.
So did they actually open you up to sort it out?
When I woke up I had a pipe in my head, a drain pipe for drainage. And the ward sister that was the expert for that type of recovery ward, “Are you ready to go, Jeffrey John?”, she said. That’s what they were all calling me. And I said, “Yes, where are we going?” “Back to your ward”, she said. “Great, hang on. Before you go”, she said, “Don’t take our scrap metal with you.” And she took the pipe out of my head. “Count to three”, she said. On the two she took it and I didn’t feel a thing. And when I got back then the nurses took the steel out in about three weeks. The nurses then took the steel things out of my head and I didn’t feel a thing.
So were they clips?
Clips. They were about that long, wide and about that long. All put in unison over my head. When I first saw it I thought, “Goodness me”.
Have you got a scar? I hadn’t noticed it.
I’ve got one there. Hang on, there it is, hang on.
It’s obviously not big because it’s not obvious to me and you can’t find it!
There it is. And there’s a gap in the back of my head which I can put my finger in. I tend sometimes, if I have a headache I tend to think, “Oh.” But then I don’t worry about it because I take a paracetamol and I thought to myself, “Well, I mustn’t do silly things like that because you don’t tempt providence.” You just get on with it and think better thoughts. And so far everything has been fine.
So did you feel peculiar before
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Luke is a retired journalist with four children.
There was sort of two knock-ons. Curiously, as soon as my leukaemia seemed to have been cured I then developed polycythaemia, which is the red cells started going out of control, so I was having to have, not blood transfusions, but blood taken out, which was rather painful, not very pleasant for a while. But anyway that settled down.
Is there any relationship between polycythaemia and leukaemia, do you know?
Well, it’s unusual to have them. From what the consultant was wondering was whether it was because one had sort of got rid of the rogue white cells that somehow it had allowed the red ones or something - I mean I’m no expert so I don’t really know - to sort of take over a bit. But I know that since when I’ve mentioned it to other consultants they’ve said, “Oh that’s interesting. You don’t often get these two together.” But I don’t know much about it, apart from that...
It’s a new one on me.
Yes, it’s also a rather sort of mediaeval practice to cure it. You just drain blood out of the patient, but there we are, that seems to be the way.
But it works?
Oh yes yes, it worked, yes. Just thins the blood I suppose.
Last reviewed: December 2018.
Last updated: August 2015.
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