In addition to treatments aimed at destroying cancer, such as chemotherapy, radiotherapy, biological therapies and stem cell transplants, people with cancer may be given other treatments to help deal with the debilitating effects of the illness or its treatment.
Some people with chronic myeloid leukaemia (CML) had excess white blood cells removed before starting treatment by being connected to a cell separator machine that collects blood from one arm, removes the unwanted cells, and returns the remaining blood via the other arm. This is known as leukapheresis.
After her CML* diagnosis Chanelle was sent to a specialist hospital to have some of her excess...
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Age at interview: 28
Age at diagnosis: 20
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And then they said, ‘Well tomorrow you’re going to have to go to another hospital, it’s a larger hospital, to have a leukapheresis, which is basically to harvest off all these extra white cells because treatment alone isn’t going to reduce it because there’s so many white cells.’
So the next day we went to the larger hospital and I really thought, I think what my coping mechanism was is this is all going to be a mistake, but you just kind of go through it in a bit of a dream and you’ve just got to try and cope with it, try to cope with what’s in front of you. So we went to the larger hospital, I had the procedure, which takes about four hours, and it entails you having to lie still. You can’t move your arm because there’s a very large needle in your arm taking out the blood and then harvesting off the white cells.
So it is a pretty tedious procedure but it gives you a lot of time to kind of reflect on what’s going on and everything, and I still was kind of keeping it together quite well.
Corticosteroids are a key part of some chemotherapy regimens. They can help to destroy cancer cells and make chemotherapy more effective, reduce allergic reactions or nausea, and often improve appetite. Kerry had steroids before any other treatment. A man with chronic lymphocytic leukaemia (CLL) had them to try to shrink his swollen lymph nodes before having chemotherapy; another had them after his red blood cells broke down (haemolysis) as a complication of CLL.
Some people were given steroids to build them up and boost their appetite when they didn’t feel like eating after treatment. Weight gain was common as a result and Marie said it might have contributed to the diabetes she developed. The second time she took steroids she controlled her weight through diet. Steroids also made her more energetic so she decorated every room in the house. Frances hated taking steroids because of the large number of pills involved.
Jim expected steroids to keep him awake but they didn't; his appetite increased so much that he...
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Age at interview: 24
Age at diagnosis: 23
So the drugs went fine really. The strong drugs, like vincristine and daunorubicin, take their time to react anyway. The steroids probably have greater noticeable effects. I think it was twenty, maybe thirty days of dexamethasone, which is said to keep you up at night and you shouldn’t have them too late in the evening, and that’s what the kids on the ward downstairs had reported. But I was fine and seemed to be able to take them whenever and they don’t keep me awake. Don’t make me too tetchy either. The only thing they do do is - I’ve always been a pretty thin, skinny guy - was make my stomach extremely bloated and make me very hungry, which is a good thing because even if you’re sitting on a bed all day, or in a chair, and not really burning any calories, you can be sure that the cocktail of chemotherapy drugs you’ll be given will be putting your body under, you know, getting it to use a lot of energy, which brings us on to the food and the diet.
The NHS food from Interserve, which isn’t fantastic, they probably expect most people to stay in the hospital a couple of days, 5 days or something, not 35 days. So there’s choice but it’s not fantastic. However, it’s definitely worth speaking because anything you don’t like or you don’t think you’re getting enough of, or you’d like something more, just ask. I ended up speaking to the caterers who prepared the food, and they would be able to give me foods that weren’t on the check boxes of what you’re allowed each day. And quite often I’d end up with two meals at lunchtime and two meals at dinner, and with the steroids I’d happily eat them both. I’ve never eaten so much food in my entire life, definitely, never eaten so much food and I didn’t really put on much weight. My belly became quite bloated but obviously my body was using all that food. And I ended up having not just Weetabix for breakfast but they were able to bring me a microwaved full English breakfast, which is really a fantastic thing to have in the morning if you are hungry.
Transfusions of red cells or platelets, are often given to people with leukaemia or myelodysplastic syndrome (MDS) because both the illness and chemotherapy can damage normal blood cell production causing shortages of red cells (anaemia), white cells (neutropenia), or platelets. It is possible to give transfusions of white blood cells (granulocytes) but there is little evidence that they are effective so they are not commonly used.
Transfusions are given from a drip into a vein in the arm or via a central line. More than one bag of blood or platelets is often given, so a transfusion could take several hours or require an overnight stay. When Neil was an inpatient he refused a third bag of blood late at night because he didn’t want to stay awake; the blood was wasted. Frances thought nothing of having transfusions as an inpatient, but to attend hospital only for a transfusion took ages and was frustrating. Marie found it boring but enjoyed chatting with the nurses and other patients; Jean felt stiff from sitting for such a long time. Neil got into trouble with the nurses when he went with his drip stand to the hospital canteen during a transfusion. Transfusions of red blood cells can rapidly make a huge difference to people’s symptoms of anaemia.
Glyn stayed in hospital overnight to be given 4 units of blood and one of platelets; he felt like...
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Age at interview: 66
Age at diagnosis: 63
Sunday, I went in Boxing day and started with a very small Campath [alemtuzumab] and steroids and then again on the Wednesday and then on the Thursday, Friday. As I say, when I went in on the Tuesday then, the 2nd of January, my bloods were really really down and so they gave me four units of blood and one unit of platelets which, of course, takes a day and a half to give you. So they kept me in until the Friday and then let me out and they said, “We’ll leave you next week and we’ll see you the week after.”
And they were giving me blood every couple of weeks to sort of boost me, when it wasn’t boosting my red bloods I had to go up to hospital and have two or three pints. And they’d do that and I’d feel like a new man then when you’ve got three pints of blood just running round your veins. It’s an incredible feeling that. I’ll never ever forget that really the first time I had it. Because I went in like a wet week and I came out really quite high and it was absolutely incredible.
Brian needed a transfusion because his white cell count dropped when his MDS (myelodysplastic syndrome) transformed into acute leukaemia. While on watch and wait for her CLL Jean became so anaemic that it caused chest pains; she was hospitalised, given a transfusion and started on chemotherapy. A man whose red cells broke down (haemolysed) as a complication of CLL was given blood transfusions but the new cells also haemolysed. Elsa had blood transfusions as the main treatment for her MDS.
Elsa learned to recognise when she needed a transfusion' she felt weak, emotional, breathless and...
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Age at interview: 52
Age at diagnosis: 48
I did get a lot of support from my local hospital and they had actually told me that I could just go in or phone them any time if I felt ill. And I think it was hard to realise when I was actually going downhill, because when you need a blood transfusion, you’re okay one minute and then all of a sudden you seem to, it comes on you. How I can explain it is I’m fine and then you just seem to go right downhill. But you don’t know what’s happening to you because it’s slow. It doesn’t just hit you just like that. You can be going up the stairs - this was the hardest time for me - If I tried to get up the stairs I couldn’t; I had to crawl up the stairs. I was so breathless with everything and I started to become very emotional, crying, and it’s one thing that I don’t really do. And I used to get weepy, I couldn’t string a sentence together, I’m not doing that well now actually, but then I just couldn’t string a sentence together. It was just a horrible feeling, really horrible. My head became extremely fuzzy not being able to think properly. And those were all the symptoms of me needing a blood transfusion.
So then I would be taken in and I would have a blood transfusion and it was just like being born again. It was just so wonderful. The next day wouldn’t be so clever, but the day after that it was just wonderful, I really felt so well again and I felt like a human being again. But it’s very difficult to describe it to somebody that hasn’t been there because you can’t tell somebody those actual feelings, the headaches, the sleeplessness, because you want to sleep all the time but you can’t because you’re too tired to sleep. And I just hope that this will help somebody else that has it and you’ll know the symptoms and the feelings that you get. They are normal symptoms of needing a blood transfusion.
And then eventually, in the end they did say to me, “Please just go, have it every two weeks, we’ll book you in to have a blood transfusion.” And the platelets seemed to be doing okay and every now and again I would have platelets.
Other people had transfusions after chemotherapy lowered their blood counts. Marie needed fortnightly transfusions alongside oral chemotherapy because it made her anaemic. Several needed frequent platelet transfusions because of severe bruising or bleeding. Two people were given irradiated blood after standard transfusions hadn’t worked; irradiating blood protects against rare complications of transfusions. Elizabeth had an infusion of lymphocytes from a donor as a boost after her stem cell transplant.
Blood cell production
Another way of correcting shortages of blood cells caused by leukaemia or its treatment is to stimulate the bone marrow to produce more. A growth factor called G-CSF (granulocyte-colony stimulating factor) can stimulate white cell production; a protein called erythropoietin (EPO) can make red cells. Both are injected under the skin (subcutaneously) in the thigh or abdomen. Elsa had both drugs regularly alongside blood transfusions for her MDS. Despite her fear of needles she chose to inject them herself to avoid daily visits from a nurse. Glyn’s first G-CSF injection was supervised by a district nurse, after that he managed it alone.
Dianne injected herself in the abdomen with G-CSF to speed up her recovery from chemotherapy so...
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Age at interview: 53
Age at diagnosis: 50
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I mean at the end of my chemotherapy I was even giving myself injections in the tummy, so it was fine.
What did you need those for?
That was really to build up the blood chemistry after the chemo just to give you a boost because sometimes it takes longer than others to get your neutrophils back up to a level where you can actually come out of isolation. And my last dose of chemotherapy - my husband, who had never ever been ill before, but that same summer had felt a little bit breathless and he thought, ‘Well this is a little bit odd’, so he went to the doctor, had a check up and went through some tests and ended up having a triple bypass - so he was in one hospital, I was in another and the only way we could talk to each other was through our staff nurses. So he was having this heart operation, I was having my last lot of chemotherapy, and I felt I needed to get out earlier because he was coming home. He was bed-ridden and in a terrible state. So I asked if the hospital could do something to help me get rid of my neutropenia quicker so I could be home and look after him for a few days. And he was a terrible patient he really was. So they were the injections in the tummy just to bring you back up to normal chemistry quicker.
Is that the stuff called G-CSF?
Yes I believe it is, yes.
A shortage of white blood cells (neutropenia) caused by leukaemia or its treatment increases the risk of catching life-threatening infections. Several people had been prescribed antibiotics to take routinely to prevent infections or were given a supply to take at the first sign of infection to avoid delays in treatment. Janet had been hospitalised previously for pneumonia that needed several courses of intravenous antibiotics and now has a supply of oral antibiotics to take when needed. A man who had been taking preventive antibiotics since completing treatment for acute myeloid leukaemia (AML) had the dose increased after contracting shingles.
Susans MDS is being monitored not treated but she has to avoid getting overtired or catching...
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Age at interview: 72
Age at diagnosis: 61
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Anyway, I wondered what advice there was. I was very pleased that they didn’t offer any treatment. It seemed to me that the treatments were going to be much worse than the complaint. But the main advice was caution over not getting too tired. Well, that was, I was by then widowed and was living on my own, yes, I think the last of the boys had, no, he was here. And I had one son at home for a little while more. But the other caution, apart from not getting too tired, was that any infection should be dealt with with antibiotics and not allowed to let rip, and even intravenously and come straight into hospital. Well, very soon through seeing my GP, who’s also been most helpful and quick to respond, we realised we could do most of this with oral antibiotics and we didn’t need to go through panic stations each time.
So have you had any kind of treatment at all for it?
Hurray. No, nothing. Nothing, except of course antibiotics, but no not intravenously except, oh, during the hip operations they have done intravenous antibiotics, certainly where the infection risk was probably at its peak. But in between times, even those wounds healed up remarkably well, they really did. And I managed to get out of hospital on the fifth or sixth day, which is not bad, especially as they were not cement jobs but sort of grow together ones on crutches.
Managing other side effects of treatments
Treatment side effects are discussed in detail in ‘Unwanted effects of treatments’ and many can be effectively managed medically. For instance, everybody receiving chemotherapy was given medication to counter nausea and vomiting. Damage to the lining of the mouth and gut (mucositis) was managed with mouth washes and painkillers such as morphine. Ann continues to take antacids long after her treatment. Glyn needed an anti-fungal gargle and gout tablets after treatment with alemtuzumab (MabCampath).
Chemotherapy gave Neil painful mouth ulcers. Morphine tablets relieved the pain but he didnt...
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Age at interview: 50
Age at diagnosis: 44
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The pain from the mouth ulcers was something I’d not experienced before, so they put me on the, oh Christ what was it? morphine. But they gave it to me in tablet form and I couldn’t get to grips with it. It was because of the - and being somebody who’s fairly anti-drugs anyway - it was the highs and the lows. When it worked, fantastic. But when you came off it the pain came back with a vengeance. So I got to the point after two days, or a day or two days and said, ‘Look. Forget the morphine. I’d prefer to be in constant pain which I can manage rather than the highs and lows.’
And the nurse specialist came and said, ‘You can’t do this. This is ridiculous.’ And I was introduced to the syringe driver. And if you don’t know about it and you have pain it’s worth investigating because it was a 24 hour supply of morphine. And it was great because it then made me able to manage that side of it.
A number of treatments may be offered as part of supportive care in addition to those mentioned above. These may vary from person to person depending on individual need. Two women were put on the contraceptive pill to reduce heavy menstrual bleeding; another had a hysterectomy. One was given HRT because treatment had brought on an early menopause (see ‘Infections and other treatment complications’). Before her diagnosis Kerry had fluid drained from one of her lungs that was making her breathless. Ian's leukaemia had caused kidney failure and he needed dialysis for a while after diagnosis. He was advised to have his dental caries filled before having total body irradiation as it can worsen tooth decay. A few people became so ill that they spent a period in intensive care and had to learn to walk again afterwards.
Gilly spent 3 weeks in intensive care where she felt completely cared for and had no fear of...
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Last reviewed: December 2018.
And they got me kind of set off to go down into critical care and I was absolutely shattered, and there’s this amazing Irish nurse, one of them, who all are quite amazing in their own ways, and I said, “Right” - when I was in and out of consciousness - I said, “I can sleep now.” And she said, “No.” I said, “But it…” I didn’t know what time it was because again in hospital time becomes completely disorientating, and I said, “I want to sleep now and you can sort out what you’re going to do in the morning.” And she said, “We don’t work like this here.” And I said, “But I have got to go to sleep.” And she said, “Gilly, we’re saving your life.” So I remember going down and my eyes were always covered because the light was so so strong. And I entered the critical care unit and this team arrived. And I remember lying really still as femur lines went in, central lines went in, intravenous lines went in. And that was my life for about three or four weeks with twenty-four seven care.
And I have many recollections. I mean I’ve written two journals of actually being and of becoming more and more ill but also realising I couldn’t leave, I couldn’t do anything. And there used to be great times when they couldn’t get all the drugs into me. It was a bit like you know when you’re over an airport and you have to fly around the airport, it was like stacking, so you had to wait. And the first lot of chemo drugs arrived and I remember lying there thinking, “I wonder if I’ll be sick. This should be interesting.” And I wasn’t. So that was fine. But eventually after a few days they had to stop that because I was dying. And I think the other thing I realised was that they just totally cared for me. They just did everything for me.
And by this point I was on full oxygen and I could only breathe for eight seconds at a time without oxygen. And my world, my external world had gone completely and all my world was just this group of people who, the professors, the consultants would come in, the doctors, whatever. And there was such gentleness. And friends would arrive and I really wasn’t quite aware of what was going on and I seemed to sleep. And I invented this land called the land of Anaconda where I’d go off and take all my friends and we’d have wonderful times and then I’d come back. And I just came back to my yoga practice because the sound of the, intensity of the oxygen mask was such that I didn’t really sleep. So for about nine days I didn’t sleep. So I would just chant and I’d go back to all my practices and then I’d wake up.
And I always remember the rhythm of the cleaners coming in. And they were cleaning everything and then they’d leave. And then somebody else would come in. And all I can say at that point I had absolutely no fear of dying. I can remember when, the day they set everything up to say that they knew that that was it, that there was nothing else they could do. And I remember being propped up and I had cannulas and lines everywhere. And my wonderful professor came in, and the level of exhaustion is just, one is just sitting there. I’d become mute because I realised that if I stopped talking it would save more energy, because that way I wouldn’t have to talk. So we’d write. But by this point I could hardly see, so we’d have a little white writing board and I’d write, say, two or three words or something.
And I remember this day as I sat there and they’d propped me up and I remember him coming in and he said, “What do you want?” And I remember just putting my