Leukaemia
Recurrence or relapse
The aim of leukaemia treatment is to achieve remission – a state in which no leukaemic cells can be found in the blood or bone marrow and the bone marrow works normally. Ideally, remission would last a lifetime, but some patients will relapse, meaning their leukaemia recurs. In chronic lymphocytic leukaemia (CLL), for example, which is currently incurable, periods of remission are interspersed with periods in treatment (see ‘Chemotherapy and how it is given’).
People with chronic myeloid leukaemia (CML) need continuous treatment to keep their symptoms at bay. Having got her CML under control through a combination of imatinib (Glivec) (standard biological therapy for CML), a restrictive diet and complementary therapies, one woman found that stress of a new relationship was having a detrimental effect on her health and she began to experience leukaemia symptoms again.
After entering a new relationship she felt that the symptoms of her CML* were returning.
After entering a new relationship she felt that the symptoms of her CML* were returning.
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You said to me earlier before we started the interview proper that you nearly had a recurrence at one point. What brought that on?
I remarried and it was a disaster. And until that point I had stayed very true to everything I was doing. And I married someone who had said he understood, and the minute the ring was on my finger he decided I wouldn’t see any of the people I’d been seeing to help me, that my diet that he’d so supported was cranky, and he had a horrible temper and when I asked him to leave he wouldn’t go. And negative energy is extremely damaging to us and at the beginning I got very upset and then I had to draw myself back and I realised. I mean I think having awareness in your body as well is a great thing that these complementary therapies bring to you. So whereas the first time round I didn’t listen to my body, this time I listened and I could feel everything that was going on inside and I was in a lot of pain, a lot of aches, I was coughing hugely again. Everything was going, it was like I was unravelling.
And I knew I needed to get back to the things I was doing but it was very difficult to do it with someone here who also didn’t work so he was at home the whole time. But again, I just had to try, and when I’d realised what was happening I had to think of my son and a way to get out of that situation. And I think what I did better was because I knew what would help me I didn’t lose control like I did the first time. But it was quite scary to see how quickly one could unravel, and knowing it was happening by my feelings, which I now recognised. Itchy skin, that was one thing that came back. My skin got terribly itchy again. So yeah it was just all the symptoms I’d had the first time round were coming back.
Did you present all that to your doctors or did you just control it with your complementary things?
No. I just controlled it. I mean, if you go to the doctor they’ll say, ‘Oh well maybe you’ve got a cold, your blood results are a bit out, so maybe you’ve got a cold, maybe you need some potassium.’ I mean I’ve been given potassium tablets at one point and I went home and I ate bananas and chocolate and that worked just as well. Or sometimes too much sun or not enough sun, things like that. And if I’m given results that are wonky I will try and sort it myself first. I have never actually taken anything else other than the Glivec.
Most cases of CML are diagnosed when they are in the so-called ‘chronic’ phase in which the condition can remain stable for a long time. Eventually the leukaemia may move into an ‘accelerated’ and then a ‘blast’ phase in which immature or ‘blast’ cells overwhelm the blood and bone marrow. When this happens intensive treatment, akin to that given for acute leukaemia, is needed to regain remission. This ‘transformation’ from one phase of CML to another had not happened to anyone we spoke to, but Elizabeth had a similar experience. After a period in which her CML had been stable, she began to feel unwell again and was eventually told she had developed a form of acute myeloid leukaemia (AML) that was not related to her CML and may have arisen from an underlying myelodysplastic condition.
Elizabeth's CML* had been under control on imatinib (Glivec) for some time when she began to feel unwell again. At first the doctors couldn't work out what was wrong but eventually diagnosed AML*.
Elizabeth's CML* had been under control on imatinib (Glivec) for some time when she began to feel unwell again. At first the doctors couldn't work out what was wrong but eventually diagnosed AML*.
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In 2004 - it always seems to happen at that time of year, I can’t understand - again we’re in Mauritius for my mother’s birthday, which is the 75th by then. And I’m not feeling well and I sort of think, “What’s going on?” Still taking the tablets. I was okay. I had my check-up before I went. Go back to London. Go back to see my consultant and I sort of said, “Oh, don’t feel right really.” And he says, “Well, I’m not surprised. Your haemoglobin is down in the dumps and there’s something going on. I don’t like this. Bone marrow biopsy straight away.” Panic stations. And I’m thinking my leukaemia’s advanced and all the rest of it. Well oh, what. Another nightmare. It was a bit like being diagnosed once again all over really, because while on Glivec you’ve got this kind of safety thing, PCR is low, leukaemia’s quiet, you know, nothing sort of going on. Then suddenly, whoosh, the whole thing sort of blows up in your face again.
Sort of then wait for the result of the bone marrow biopsy. Thankfully, we didn’t have to wait too long because he realised how panicky I was getting then, and sort of said, “Well, it’s strange but your PCR is still low but you have abnormalities in your normal cells.” And it was quite a high percentage of blasts, which were not indicative of anything at that time. It was just bone marrow sort of, idiosyncrasy really in the marrow. Nobody could pinpoint it. Nobody could say, “Oh, this is that disease, that disease or that disease.” It was really everybody, I remember the professor was going round with my slides showing to other people sort of saying, “What do you think this woman has?”
And I was definitely not feeling right and I kept thinking, “I need a holiday.” I didn’t think it was the leukaemia. And I had this massive cold sore on the side of my mouth that started getting worse and worse and worse. I could actually smell my flesh rotting. It was awful and I couldn’t even eat. I couldn’t do anything.
And the consultant at the hospital first of all monitored it and sort of thought, “Hmm, okay, well let’s give you anti-virals and blah blah blah to go with that.” But then by sort of middle of January it was really looking very nasty indeed and then my blood count started really showing that there was something definitely not right going on. And I went to my appointments, lots of make-up just to appear very healthy and not sort of for him to think, “Oh well, she’s very ill.” But he saw through all that and sort of said, “Okay. I want to do a bone marrow biopsy.” So I said, “Okay, oh well, maybe tomorrow, I’ll see if my husband can get some time off work.” He said, “No, now.” And I sort of thought, “Oh well.” Had to bite the bullet and go and have my bone marrow biopsy, but for him to say this to me I knew that really something bad had happened there.
And then the panic starts setting in again. Had the bone marrow. Even the guy who did the bone marrow biopsy, I could see really what he got out wasn’t what he expected to get out even, I think they can just tell by consistency or whatever. And then my doctor told me, “You won’t have to wait, I’ll let you know, as soon as I know I’ll let you know.” And that was the afternoon. And the next day he rang me and he said, “Right, pack your bag. I want you here by six o’clock. You’re being admitted.” And I asked him why and what was happening and whatever really, and he said, “Well, your blasts have increased considerably”, and they were trickling on the sixteen to twenty per cent during the year and not going anywhere. And I said, “Well, how how much to?” And he told me fifty. I always remember that because you’ll see what’s coming. And so I said, “Oh, fifty. Oh, my God”, you know, and , “Right, okay”.
Oh yes, the junior doctor arrives and just casually throws a protocol sheet on my table in in my room at the hospital and says, “Oh this is your protocol for the FLAG-Ida.”, which is, was the chemo protocol I was going to have. And they told me then that I had developed a form of AML.
After spending several months in hospital having intensive treatment, many people with acute leukaemia achieve remission and treatment stops. If their remission lasts for several years they are considered cured. Unfortunately not everyone is so lucky and the leukaemia returns. This is called a recurrence or relapse. Recurrences may be treated with different drugs or combinations of drugs from those that were used before, because the leukaemia may have been resistant to the original treatment. Gilly’s AML relapsed only four months after finishing intensive chemotherapy. Her recurrence was treated with an allogeneic (donor) stem cell transplant, which achieved another remission.
After 5 months in remission, when she was just beginning to think about returning to work, Gilly realised that her energy levels had dropped and discovered that her AML* had come back.
After 5 months in remission, when she was just beginning to think about returning to work, Gilly realised that her energy levels had dropped and discovered that her AML* had come back.
Sex: Female
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And I was going for six-weekly check-ups and the leukaemia came back in July. And I realised I think, again, in about the June that my energy had altered again. I was also very aware that the hospital had saved my life once and I’d come back. I was aware that I could die so popped back in again.
And this was for about five weeks and basically I knew that they couldn’t do anything else with the chemo, it would be a bone marrow. And I would say that that visit in the July and August was, even by my standards it, on a kind of conscious level, mentally extremely tough because my levels had, my neutrophils hadn’t come up, I had no immune system, I was still very ill so I couldn’t leave. And it was this intensity of just being in one room knowing that I couldn’t leave, that I had to kind of pull on some fairly deep power to keep going, but they eventually were, I was able to come out for, like, one day to come and visit the house and then go back.
And I was just beginning to move into maybe taking some more students back on again, and that’s when it came back, that it had come back. And I think that’s why when it came back it was a massive kind of cognitive intellectual ‘Whoa’ this time because I was conscious when I was then given the second diagnosis that it had come back. And I thought, “Okay. Here we go again.” So you just get your stuff out, get your suitcase out, go off on retreat. By this point everybody knew. I just phoned up six people, they knew exactly what to do. Everybody had the keys, it just got a bit like déjà vu, so everybody knew what they had to do. But I knew that if I didn’t get a bone marrow donor that I’d die. And then, as I said, if that’s the journey I would have to take that was the journey I would have to take.
Joanna’s husband’s AML relapsed after nearly five years in remission. The risks of a stem cell transplant were considered too great but he was given a variety of chemotherapies and other treatments, none of which worked for long. Joanna realised that her husband was going downhill but found it difficult to deal with, as he did not seem to want to discuss it. A series of small strokes then reduced his ability to communicate. The lack of communication between them made it hard for her to know how best to help him.
Joanna knew from her husband's blood counts that the AML* had relapsed and he was going downhill; she felt frustrated because he didn't want to talk about it.
Joanna knew from her husband's blood counts that the AML* had relapsed and he was going downhill; she felt frustrated because he didn't want to talk about it.
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And then as we were coming up to the five years - and everybody says five years is the marker - that sounded rather nice, we’re actually getting there, and we were being told, “You’re at the tail of the curve, you’re over the hump, you’re likely to be okay”. And then I could see from a set of results that it obviously wasn’t. Something had shifted. Now I don’t think he, although he recorded all the results himself, I don’t think he thought too closely about what they might mean. And I’d been watching them like a hawk for years and I was fairly clear that we’d run into a problem that was quite likely to be serious. And it was just about when one of the children was about to go abroad for a long time and I was quite glad that he set off before we went for the second check, because I felt if we got the results I thought we would get, that might upset his plans.
And I knew, I could see from the way the blood results were going, absolutely straightforward blood count of all the normal haemoglobin and white and platelets and the rest of it, what’s happening. And from that point of view, the fact that he was perhaps not trying to take on board the other bits of unfinished business that really are part of what this process is about, was something that I didn’t find at all easy. I still don’t, that he wasn’t able to talk about, you know, recognising that he didn’t have much longer to live, that I did, that those things were going to have to be lived with afterwards. He didn’t want to talk about it. I’m sure he knew, but as far as he was concerned that wasn’t the sort of thing that one needs to spend any time on. I mean we’d been through a few pretty serious crises by the end. I mean four or five fairly serious episodes that looked as if they might have been the end of the line anyway. And I think he got fed up with having to confront this and just stopped wanting to deal with it, which I didn’t find at all easy.
But then there was also just all the practical, everyday things. As he gradually got less and less strong we had to start getting off the bicycle into the car, get the disabled permit sorted out, eventually into the wheelchair, those sort of things. And on top of all of that there were the things that I think may be fairly common when you’ve had a lot of chemotherapy, but the whole blood system doesn’t work as well. And I think for him, at least, the results were that there were very small episodes of little strokes which gradually reduced his ability to communicate. So I was about the only person who actually knew what was being said or why. So then he really couldn’t function, couldn’t be trusted to function without someone around at one level. And certainly eventually other people would find it quite difficult to make out what he was actually trying to talk about without a little bit of help.
So all of those things added up to quite a serious set of problems, if you like, of practical issues which, in a way I suppose I just sank myself into dealing with them as best I could, and keeping up a job, admittedly, by then only half time, which I felt was absolutely all I could legitimately charge anyone for.
But that wasn’t necessarily the only sensible thing to have been doing. I mean it would have been perhaps quite sensible to deal with some of the emotional as well as the practical things which haven’t in a sense had a chance to be sort of ironed through because it just was an awful lot of hard work. I mean we had a lot of fun doing things. We went on going to theatres, to dinner with people and so on, really for a very long time, right until the last few weeks. But I mean it was very upsetting to see that, you know, you went to a theatre and, and theatre was one of his most favourite things and gradually he wasn’t really taking in the plot or able to understand quite what was going on or why and was tired, and, you know, it was, it was more a gesture to, “I’m a survivor”, than something that that he was genuinely enjoying.
Joanna found watching her husband’s gradual decline upsetting and wondered whether the experience was harder for him or for her, saying, “You know it’s worse to be inside than to be watching it, at one level. At another level, if you’re inside it you’re dealing with it and so maybe it’s not so bad. I don’t know.”
Her husband gradually became less mobile and Joanna got a wheelchair for him. She also got a hospital bed to put in the living room at home and an emergency alarm system that she used to get help when he fell and she couldn't lift him up. Joanna knew that her husband was dying and arranged for hospice care to be provided at home. The health professionals seemed reluctant to say how soon he might die, so in the last few days she couldn't tell how close he was to death. Looking back she feels that his death could have been managed better.
Joanna found it difficult to find out when her husband might die and was surprised when it happened. She had assumed that he wanted to die at home but now wonders whether it had been the best thing.
Joanna found it difficult to find out when her husband might die and was surprised when it happened. She had assumed that he wanted to die at home but now wonders whether it had been the best thing.
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So would you like to tell me a bit more about your husband’s death and how that came about and how you felt about it?
Okay. Well, one of the things that we’d actually, certainly had said between us more than once, was that he didn’t actually like being in the hospital. So I had assumed that what he would like would be to be able to be allowed to die at home. And I certainly had gone through that with my mother. She didn’t want to die in hospital and we were able to get it all organised for her to die at home, so I knew it could be done. And I thought that that’s what he would like.
I now know that I don’t know whether he would have liked that, which is upsetting actually, because it might be that he would have felt more secure in a physical environment that was geared up to deal with the problem. But we’d decided to have the bed, have all the facilities that would make the medical people play game and play ball and be willing to help. So, as I said, I mean we did have the hospice people in. I’d had to actually fight to get the hospice people or the Macmillan nurse people to take us on. I’ve never understood this because everybody else I know who’s got cancer said, “Oh, its wonderful. The Macmillan nurse.” I’ve no idea why we weren’t offered one. I’ve no idea why, I had to ask about whether such a thing was available. I just don’t understand that. But anyway our local PCT uses their own employees rather than Macmillan, but they’re the same sort of thing but they don’t call themselves Macmillan, but so there’s one attached to the hospice. And we’d had a number of them because over the years they’d changed.
And the one that we did have at the time was one that my husband didn’t feel understood him at all because he kept offering things like art therapy and so on. But I did keep on trying to keep in touch and get him to come round. And eventually, towards the end, towards the last two or three days, he realised that things definitely had taken a visible turn in the direction that death was not that far away. And so he decided to bring in the doctor as well, who hadn’t met him, my husband hadn’t met him, who was associated with the hospice. Because they’re both based, I think, well not based physically, but related to the system through the local hospice. And they both came in the morning and I tried to get both of them to help me to understand, was this really very near the end. Because my husband had actually stopped wanting to eat and he’d become very, I don’t know, a bit agitated actually, and he didn’t seem to be able to eat actually. He didn’t seem to be able to swallow really. And I didn’t actually know why, and it was associated with, he needs to take these pills so let’s try and do it in an easier way with liquid or, I don’t know, I can’t remember what they suggested.
But they came round and they sort of started to give me bits of advice and they still, as I think I said, didn’t actually want to commit themselves to saying that this could have been really quite close to death. I don’t know why they didn’t connect up, unless it was that they had seen so little of him. I mean one person hadn’t seen him at all. The other person hadn’t seen him very often. And to be honest I’d not seen much of this sort of thing myself, so although I was quite concerned and kept saying, “Shouldn’t I get my son home?”, they didn’t actually respond to that until afterwards. And then they rang me up, or one of them did, and said, “Well, actually on second thoughts, why don’t you.” And of course by that time it was, it was four in the morning in China so I thought, “Well, I’ll wait a few more hours and do it at breakfast time.” Well, a few more hours got us to really the very end of the day.
And my other son did come round and was here. And we were sitting sort of watching what was happening and and my husband had gone very comatose. I mean he was really making a rather horrible sort of rasping breathing and pretty unconscious. And [um], I don’t know, we’d turned to make a cup of kettle, cup of tea, turn on the kettle or whatever, and we realised that he’d stopped breathing. And neither of us could actually quite believe that this meant that he’d died. I mean, you know, it was, it was still a sort of shock, you know, given that two medical people hadn’t hadn’t had any inkling.
*AML – Acute myeloid leukaemia
CML – Chronic myeloid leukaemia
Last reviewed: December 2018.
Last updated: August 2015.
Last updated: August 2015.
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