Chemotherapy is the use of drugs, known as “cytotoxic”, which destroy rapidly dividing cells like cancer cells. Unfortunately, certain healthy cells in the body also divide rapidly, such as those of the skin and gut, and these can also be damaged by chemotherapy, causing unwanted side effects. (See ‘Unwanted effects of treatments’). The range of chemotherapy drugs and their combinations is huge, and complex protocols for treating different types of leukaemia have been developed in clinical trials. Development continues, so most people diagnosed with leukaemia are invited to join a trial. You can learn about people’s experiences of being invited to take part in a clinical trial in a dedicated section of healthtalk.org; see Clinical Trials.
Chemotherapy takes many forms. Stronger chemotherapies are given by injection or drip (often into a vein but sometimes into muscle, under the skin or into the spine) and are usually used in acute leukaemias to destroy the leukaemia cells and allow the bone marrow to work normally. Milder chemotherapies are often used to relieve the symptoms of chronic lymphocytic leukaemia and are given as tablets to take at home. Chemotherapy can be combined with other types of treatment, for example, radiotherapy.
Injection into a vein (intravenously)
People with acute leukaemia get most of their chemotherapy intravenously, meaning the drug is injected directly into a vein. Much of their leukaemia treatment will take place in hospital and will require periods when they are given chemotherapy daily, known as ‘intensive chemotherapy’ (see ‘Intensive chemotherapy’ and ‘Being in hospital’). To avoid repeated vein punctures in the arms for injections and taking blood samples, most inpatients have a central line installed in a vein in their chest, arm or groin (e.g. a Hickman line), which can stay there for the duration of treatment (see ‘Central lines’).
When intravenous chemotherapy is needed less often than in intensive treatment regimens, a central line is not used and people are treated as outpatients, with the drugs being given through a drip in the arm. Having received intensive chemotherapy in hospital for his acute lymphoblastic leukaemia (ALL), Jim now attends a day centre for occasional intravenous chemotherapy. On other days he takes chemotherapy tablets at home. He advises others to take something with them to pass the time in outpatient sessions.
'Ace' is a retired musician. He is divorced with no children. Ethnic background: Black Irish/American.
I was having, well I’ve, about three times a week. Twice, three times then it could be five times a week, then, it’s then cut down, then you have, you do a circuit of four lots then you have, what can I say, a couple of weeks off. You know, you don’t have no treatment at all, they just take blood out, make sure your bloods or everything is all right, you’re not suffering from any upset, colds or anything.
But when you’ve got to have your chemo that you’ve got to have, oh, you go there and then they’ve got to take blood, then that goes to the path lab, then it comes back, which is a couple of hours. Then they’ve got to administer the chemo, if everything’s all right, give you the chemotherapy, which is two and a half hours, three hours. So you’re there, I’ve left at half past eight at night, I haven’t got home until half past eight at night, except if your blood isn’t right or something’s wrong, you know, then they’ve got to wait until everything’s, they’ve got to put you on a drip with potassium or magnesium. And I’ve got home literally at half past eight at night and I’ve been there at eleven o’clock in the morning. It’s very tiring but then it’s got to be done. You don’t want to die do you?
So when you have your arsenic chemotherapy you don’t have to stay in hospital do you?
No, I go to a day, what do you call it?
Day unit, day centre?
Day unit. They have a day unit and they, well, as I said, they can be a couple of hours, three hours or four hours, or it could be, if it doesn’t work, but they administer it, you know, you’ve got to be there twice a week. Like, you have it on a Monday then you got to go back on a Wednesday and then a Friday, or something like that.
Two men we spoke to had a rare type of leukaemia called 'hairy cell' leukaemia. Mike attended hospital on five days in a row, for an intravenous infusion of a chemotherapy drug called cladribine or Leustat. Luke attended hospital once a week for six weeks for an infusion of a drug called pentostatin or Nipent. In both cases the infusions took about 2 hours each and no further treatment was needed.
Into the spine (intrathecally)
Some people with acute leukaemia received chemotherapy intrathecally alongside other treatments. This is necessary when doctors think that leukaemia cells have entered the brain, as chemotherapy given by injection into a vein or via a central line does not reach the brain. After giving a local anaesthetic a hollow needle is inserted into the spinal canal (lumbar puncture) and the chemotherapy injected. It is important to stay as still as possible during the procedure and people must lie flat for one or more hours afterwards to avoid headaches. Several people had this type of chemotherapy and most found the procedure bearable but Frances found it the most distressing part of her treatment and developed a phobia about it. Some had problems with pain and headache afterwards.
Ian became an occupational therapist after retiring from the police. He is married and has two children aged 16 & 14. Ethnic background: White Welsh.
You had some chemotherapy injected into your spine.
Tell me about that.
They went through that in some details with me about how it was, about how it could be quite painful and why they were doing it, because they had to gain access I think up to my brain and what have you, and I think I had about five doses. I was okay with that. I think I was, it was done in my bedroom because I had a private suite most of the time.
So we were standing in the bedroom and it was a case of me leaning over the window I think, and I would just have a look out the window. That’s the agreement we’d had, and that I’d calmly look out the window. And in fact, one of the doctors was doing it, he was quite inexperienced and I was asked if I was okay for him to do it. And I looked at this South African gentleman and I thought, ‘Well he’s got to do it some-, somebody’s going to have to, you know.’
And it was fine, absolutely fine. He was very, very careful. Probably more careful because he was new, and he did another couple of times, so I was okay with it. I know some people have got quite big reservations and concerns about it and it’s obvious from the way they were talking to me, but it’s something that I was quite calm, quite happy with to a degree, and I just I was very good with keeping that advice of staying still.
It’s good hour afterwards in fact that I’m sure they told me it was more like half a day if you can, the longer the better, stay still because headaches and what have you were mentioned I think, and dizziness. So I did, that’s where I was at the time, I was quite happy to just lay down and sleep and watch some awful telly. Watched some awful telly, yeah. Yeah so again I followed, I listened to what they say on that one, yeah.
Age at interview:
Age at diagnosis:
Jim is a video game designer. He is cohabiting with his partner and has no children. Ethnic background: White British.
The worst thing though was the intrathecal or spinal tap, sometimes called lumbar puncture, delivery of intrathecal methotrexate chemotherapy into the cerebrospinal fluid. It doesn’t really, you know, bit of anaesthetic, you know, and a brave face. You don’t really feel much pain, it’s a bit uncomfortable, sure, but it doesn’t last that long. That’s okay, but the problem I had for one reason or another, no one could work out, that there’s a good chance that the pressure around the fluid in your spinal column and around the brain has to be just right or you can get what are called pressure headaches which, in my experience, no painkiller can even touch or go anywhere near. You know, I tried everything they’d give me at one time or another, you know, morphine in the arm, oral morphine, codeine, tramadol, lots of paracetamol. Nothing really did anything.
And when I was in the hospital a couple of days after I had this spinal tap procedure I noticed that I’d start getting one of these headaches. If I was sitting up for any prolonged period of time, about half an hour, and the only thing that would make this go away was lying flat. And so this reduced my mobility a lot more than I’d want and I think a lot more than other people, and this isn’t a particularly common thing and was probably caused by some of the spinal fluid leaking when they did the procedure, which is no fault of their own. The procedure, every time I had it, went fine. But at one point needed, it took about ten days of these headaches slowly being able to sit up for longer and longer periods before I could spend the whole day sitting up in a chair, which certainly made things more difficult, but at least there was the relief of being able to lie down.
After I was let out of hospital which, I am going to continue to have these procedures every several weeks for a couple of years, so you have to kind of get used to them. It was about seven days after I’d had the procedure I started getting these headaches and they’re really bad, and it got to the point where even if I was lying down it was terrible. And so I admitted myself to my local hospital, not the one I had the chemotherapy in, saw various people, ended up going back to the main hospital just with this problem of these headaches. And the answer, which was not given by anyone on my team, they did a referral to a consultant anaesthetist who does hundreds of these spinal taps mostly for pregnant women, I believe. And the answer was to use as small a needle as possible. The paediatric sized needle rather than, there’s only very, very, very, very, very tiny difference, and to give me some dexamethasone, which is a steroid, just intravenously, and it reduces swelling. And since I’ve been using the smaller needle and the dexamethasone and taking extra care not to do any bending or heavy lifting for about two weeks after the procedure, I haven’t had these headaches at all, which has been a godsend because if I had them every time my life would be a lot more miserable because other than that I feel fine.
Age at interview:
Age at diagnosis:
Deb is a business consultant. He is married with two children aged 10. Ethnic background: Indian.
They started giving my chemo immediately. Initially, it was, I think once, I think three times a week. That was a pretty high dose at a very, very quick succession. And as someone who has gone through it is also I remember that is very, another painful episode, of course not as much as a bone marrow extraction, but they drill a hole in the spinal cord and then they put the chemo. Then once they started the treatment I was having another phase of difficulty. I had a typical meningitic pain, what the doctor said to me, because a large number of leukaemic cells started dying in my system and they were rubbing against the nerve and they were almost flooded in my cerebrospinal fluid. So there was not being, I mean there was very, I don’t exactly know what they meant, I can’t remember what exactly they told, but it is something like the body sends out all these rogue cells from the cerebrospinal fluid to the blood and from that discharges out, outside the system, which is a very slow process.
Since there was a lot of dead cells, my nervous system was not functioning properly so I had this problem. Then I couldn’t move from my bed. If I somehow, if I could try to shift my side and then it was giving me terrible pain. The pain was at times it was so severe and so shrill pain. It was absolutely difficult. I used to start crying and then, not crying exactly, start shouting, “What the hell is happening to me?” And so long I was, “Okay, and what is it?” But the doctors they kept on injecting a lot of painkillers and then a lot of medicines for this kind of pain. And mostly nothing worked. I had to go through the pain. I couldn’t sit up. I was lying in a flat bed. I couldn’t eat. I couldn’t drink for most of the days. Most of the medicines they used to inject through my Hickman line and that was kind of a difficult thing. I mean in the night I couldn’t sleep because of that pain because I couldn’t turn. My whole spinal cord was paining like anything as if someone is hammering in my spinal cord, I mean putting some nails in my spinal cord. It was terrible.
So I continued like that and I remember that there used to be some days where they used to give me some medicine that is some morphine-based medicine but which even after injecting those medicines also I couldn’t get to sleep. It used to put me some slumber and then I woke up usually. And there was also a time like in the day you can take only four or five of those kind of painkillers. Now after four and five also I did not have any other option so that was a terrible time.
But anyway, I got over with that and after that I came back after that one is over and I went down through that cycle of this treatment that is injecting chemotherapy in my cerebrospinal fluid for another two months consecutive.
Several people with acute leukaemia followed their intensive treatment with so-called ‘maintenance’ chemotherapy in tablet form (oral) and were grateful for the sense of freedom it gave them to be treated at home. Two people with chronic myeloid leukaemia (CML) had a mild oral chemotherapy drug called hydroxyurea immediately after diagnosis to tide them over until more aggressive treatment could be started. Elsa had this drug for her essential thrombocythaemia that preceded her myelodysplastic syndrome (MDS).
Oral chemotherapy is usually the first-line treatment for chronic lymphocytic leukaemia (CLL), typically after a period of watch and wait. At the time these interviews were done the oral chemotherapy drugs commonly used were chlorambucil, a combination of fludarabine and cyclophosphamide (known as FluCy). A typical course of chlorambucil involves several tablets a day taken for the first few days in each month with the rest of the month off to recover. The dose and the number of courses varied. Of those we interviewed most people started with one or more courses of chlorambucil, the mildest drug, and then if necessary moved on to fludarabine or cyclophosphamide or both together ('FluCy').
Jean is a retired tea lady. She is widowed with two adult children. Ethnic background: White English.
Of course, when I went for my check-up the doctor nearly went spare. She said, “You’re terribly anaemic”, because I have to have a blood test two days before I go, and she said, “That was angina pain.” She said, “You could have had a heart attack”, which frightened me and she said, “You can’t go home. You’ll have to come into hospital now and have some blood and be checked over.” So that was panic.
So I had to give my daughter-in-law a list of where everything was, and I was in there for about three days where they gave me three lots of blood and started me on some pills. And I was on those for about two months but I was having to have blood transfusions, first of all it was monthly, then it got down to weekly, because it just, I wasn’t making any red blood cells. So she said, oh, she’d have to change the tablets I was on to stronger ones, but before she could do that I needed to have bone marrow taken.
But these new ones have worked much better so I’ve been cut down from once a week to once a fortnight, and my next transfusion, if it’s necessary, is in three weeks time after I’ve seen the doctor. And because she said that now I’ve started to make my own blood cells again. So she hopes that I’ll only need four months treatment, so that would take me to September, then I’d have to have another bone marrow test to check it’s all right and then hopefully I’ll come off them for a while. And that’s it.
Nowadays the treatment of choice for CLL is fludarabine and cyclophosphamide combined with an intravenous infusion (through a drip) of the biological therapy, rituximab (see ‘Biological therapies’); this combination treatment is known as FCR. FCR may not be suitable for people with other health issues, who may be given chlorambucil instead. We have not yet interviewed anyone who had FCR.
Newer drugs for the treatment of CLL are being developed which are proving to be very effective and safe.
These treatments aim to reduce the numbers of white blood cells (known as a “remission” in leukaemia) and hence cause a reduction in, or the complete elimination of, symptoms (see ‘Living with the symptoms of CLL’). Remissions vary in length from a few weeks to several years. When treatment is needed after a remission, often the same drug is used as before but after a while it may stop working, so people are switched to one of the others.
Marie is a housewife. She is married with two adult children. Ethnic background: White British.
It was diagnosed in 1992 and I think it was in 1994 when I was finally told I’d got to start my treatment. I went to my local hospital and saw the consultant and he told me that I would be on chlorambucil medication. I asked him, the first thing I asked him, “Will I lose my hair?”, because that petrified me. And he said no, I wouldn’t lose my hair. My hair would thin. I would have fourteen days of chlorambucil and fourteen days off. I would then have blood tests, see him in a month’s time and start all over again, and it would last for six months. I started the chlorambucil. I sat imagining all the symptoms that I read in the packet and decided that I wasn’t reading any more. If a symptom came up I would then look at the packet but not read them all and get depressed.
The first fourteen days, because of the fear of all the symptoms which I thought I might have, I panicked. I had fourteen days off and forgot about it. I went back and started my second month of fourteen days and I can honestly say I didn’t have any problems whatsoever. I had no side effects. In fact, sometimes because of no side effects I sometimes wondered if I’d actually taken them and I had to keep counting my pills. I got through that. My white cell count came down. I was fit again. I continued my job. The tiredness left me, the aching bones left me and I went for six-monthly check-ups.
I think it was two years and I had to start again, and this is what life was. Six months of chlorambucil, fine again, fit again. I didn’t lose my hair, in fact my hair grew like a train. The steroids made me go mad in the house. I painted everywhere bright colours and decorated every single room in the house. I tore the garden apart. I had so much energy it was wonderful, but I gained a lot of weight.
One woman had a problem getting her chemotherapy pills. Having seen her consultant late in the day, the pharmacy had closed so she had to return on another day to collect them, only to find that the consultant had not specified the dose or signed the prescription, causing further delays.
In addition to taking chemotherapy tablets, people may be given steroids, anti-sickness drugs, antibiotics and antivirals, all in tablet form. This meant having to take many pills on some days and different numbers of pills on different days at different times, which could be complicated to keep track of, especially for people already taking medicines for other conditions. For a long time after her treatment Deirdre had an aversion to drinking water because she associated it with taking tablets. Despite the large number of tablets they had to take, some felt it was preferable and much easier than attending hospital for intravenous chemotherapy.
Marilyn is a retired administrator for Oxfam. She is married with one adult child. Ethnic background: White English.
Good. Okay, tell me about this latest chemo, the fludarabine and clyclophosphamide. How many pills? How often?
Now that was, my husband did a flow chart on the wall because it was three days of three lots of fludarabine, three lots of cyclophosphamide. There were also antiviral tablets to take. There were sickness tablets to take. And there were also, I can’t remember what they’re for, another sort of to stop you getting pneumonia I think, which was co-trimoxazole. Can’t remember what that’s for but it’s something to do with infections.
So on day one took a sickness tablet about an hour and a half before the six chemo tablets. So we had to work it out so that, like that, so he did a fantastic chart on the wall, pen, tick it off. Sickness tablets, six chemo tablets plus an antiviral, plus every Monday, Wednesday and Friday this other tablet which I think was to do with chest infections, oh and shingles, things like that, and herpes, that’s what those are for. So on top of that I was also taking my own antidepressants and various things that I take. And then the rest of the week you just took the antivirals and the sort of thing that was like an antibiotic. Then the next day was the same, and the next day was the same, so there’s three days where you take these multiple tablets. Oh, and I forgot after the sickness tablet in the morning you have to take it twelve hours in the evening ready to combat anything, any breakthrough sickness.
Thelma mentioned having intramuscular injections of a trial drug and also injected herself with a chemotherapy called cytarabine (Ara C). Kerry was given chemotherapy via an inhaler because her lungs were affected by her ALL.