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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme no. 6 - Leukaemia
RADIO 4
TUESDAY 06/03/07 2100-2130
PRESENTER:
MARK PORTER
REPORTER: CAROLINE SWINBURNE
CONTRIBUTORS:
SARAH LAWSON
JULIA HEATH
PRODUCER:
PAULA MCGRATH
NOT CHECKED AS BROADCASTbr />
PORTER
Hello. For today's programme I've travelled to the Midlands, to Birmingham Children's Hospital to find out more about the most common of all childhood cancers - leukaemia. One in ten of all children diagnosed with the condition are seen here, often sent in urgently by a worried GP, to a clinic like the one run by paediatric haematologist Dr Sarah Lawson.
LAWSON
The most simple way of looking at it is it's a form of cancer that affects the blood cells, so it's really cancer of the blood. And leukaemia is a cancer of the white cells of the blood.
PORTER
And who's likely to get it and when?
LAWSON
Well anyone really, it doesn't differentiate between the sexes or age at all. There are certain patterns, for example, acute lymphoblastic leukaemia, which is the commonest type, is more common in younger children, sort of two to five year olds, whereas acute myeloid leukaemia is - tends to be a little bit more common in the teenagers but it can affect any age, it affects boys, it affects girls, it affects all ethnic groups as well.
PORTER
Do we know why some children develop it, are there associated risk factors?
LAWSON
In a very, very small percentage, I mean the vast majority - 99% of cases - we have no idea what causes it. And there's been lots of stuff in the press about is it because you live next to a power cable or something and none of that has been proven, so there's no known cause in the vast majority. A few have inherited associations but they would be quite obvious.
PORTER
Looking at the more common side - the ALL - this presents in the younger children you were saying, how typically might a parent or indeed their GP notice that something was awry?
LAWSON
Well I think - I mean that notoriously is really, really difficult because the usual presentation with acute lymphoblastic leukaemia is very non-specific, it's often the child has been a little bit more tired over the last few weeks, maybe not playing football at school or has a few more bruises than usual and it's usually very non-specific and has been going on just a few weeks. And the parents take them to the GP or bring them up to hospital because they're not quite right and so the diagnosis then is often an enormous shock because they thought it was a viral illness or something and so it's often very non-specific.
PORTER
And the bruising's coming about because?
LAWSON
Well when you get leukaemia what happens is the leukaemic cells, which are the cancerous cells, take over the normal bone marrow, so the normal bone marrow cells can't work properly, so your normal bone marrow can't produce your normal platelets, normal red cells, normal white cells, so because platelets help your blood clot because the platelets maybe low that would be more likely to make you bruise.
PORTER
So you're presented with a child who has non-specific symptoms, you're obviously looking for more sinister causes, what's the first thing you might do?
LAWSON
The first thing obviously we examine them to see if there's anything else but the first test is a blood count and that often but not always gives us the diagnosis straightaway because it will show that they're anaemic, that they've got a low platelet count and often you can see the abnormal white cells on the blood count and on the blood film that you do.
PORTER
You presumably get the blood test result pretty well straightaway in hospital, so you know what's going on.
LAWSON
Yeah, so the suspicion is often there quite early on, the child's also got these non-specific symptoms and then the blood count is very suggestive that they've got leukaemia.
PORTER
I can only think about - of one thing worse than being told that you have a form of cancer yourself and that's being told that your child has. How do they react?
LAWSON
Amazingly well I must admit in my experience, I mean not surprisingly very upset but most parents I think because it's their child are extremely strong but yes are very upset privately and away from the child.
PORTER
At what sort of age would you start talking to the child direct? When are they old enough to understand what's wrong with them?
LAWSON
Well I mean they have to understand from quite a young age that something's going on because even sort of three or four year olds are taken out of nursery, their life has changed and obviously what you say will vary according to the age and the sort of competence of the child. So very young children we tend to say you've got poorly blood and you need treatment to make it better and that's where sort of our Macmillan nurses have a very large role to play in helping take the child and the family through that because they need blood tests regularly, they often need cannulations - so drips putting up and needles putting in. So it can be potentially traumatic but if you've taken the child through it, even when they're two or three, that this is what they need to have then they can cope with it a lot better. And then with older children then they need to know it's a type of cancer but we can treat it in the vast majority of cases.
HEATH
Most of the treatment now for children with the commonest cause of childhood leukaemia have their chemotherapy as outpatients.
PORTER
Staff Nurse Julia Heath is one of a team who run the Haematology Oncology Outpatient Department at the Children's Hospital. It's open 12 hours a day, five days a week for children with leukaemia and offers everything from routine monitoring blood tests, to chemotherapy.
HEATH
They just come for a few hours each day and have their treatment and then go home again. So we care for those children while they're here, we set up their chemotherapy and do all the blood tests.
PORTER
So the chemotherapy's given how?
HEATH
In the early stages when the children are first diagnosed that's usually given through a cannula - a little tube into the peripheral veins. And once their treatment's established most of them opt to have a central catheter put in for ...
PORTER
Is it a permanent access ...
HEATH
It's like a permanent tube that goes in and - into their chest and they have their chemotherapy via that.
PORTER
Saves the needles.
HEATH
It does, it does.
PORTER
And presumably they can have their blood taken through that as well can they?
HEATH
Yeah they can have everything through - using their line, which they commonly call - we call wigglies.
PORTER
Wigglies yes, no I've come across that before.
And which one's the dinosaur, is that the dinosaur?
JORDAN
No.
PORTER
Who's that then?
JORDAN
King Kong.
PORTER
He's a goody is he?
JORDAN
Yeah. I'll show you who's the dinosaur. Him.
PORTER
Oh hand on - ooh crickey - the one with the big teeth, him, him.
JORDAN
Yeah.
PORTER
Five-year-old Aston Villa fan Jordan Tatton was diagnosed with the most common type of childhood leukaemia - ALL - just over a week ago - and his Dad Dave has been at his bedside ever since.
Now Jordan's looking very resplendent in his Aston Villa shirt here, was that a present?
DAVE
Yeah his uncle, Rob bought it this morning.
PORTER
Right. I bet he's getting lots of presents now is he?
DAVE
Oh cupboards full. Too much.
PORTER
So he's started treatment already?
DAVE
Yeah he's been on it a week Thursday.
PORTER
And how's he been - he looks well?
DAVE
Yeah well the first few days because he was quite bad, his white cells were really high, then they've gradually gone down to zero practically, he's on the right track, it's going to be long.
PORTER
Have you noticed a change in him just in that time, has he got better do you think?
DAVE
Oh he's back to himself at the moment yeah - eating, drinking.
PORTER
And how are you coping?
DAVE
Not too bad.
PORTER
Has Jordan got any brothers and sisters?
DAVE
Yeah he's got an older brother, Jake, 10 and a younger brother Louis three. They're with their mum.
PORTER
So are you taking it in turns - you're running shifts are you?
DAVE
No I've been here - he wants me every night so I'm prepared to stop.
PORTER
You're dad's boy are you Jordan? So he's likely to be in hospital for how long now?
DAVE
About six months because he's on the intensive treatment.
PORTER
And how's that going to work out for you then in terms of - presumably you work, do you work?
DAVE
Yeah I work at Jaguar - Jaguar cars - and they've said have as long as you want off.
PORTER
So that's what you envisage, that's what you see yourself doing now for the foreseeable future is with ...?
DAVE
Well to tell you the truth I'm not bothered - bothered about work.
PORTER
Quite right, I mean it's your - the priority is getting Jordan better.
DAVE
I think at six weeks he might go home for a week and back in for another six if everything goes well.
JASMINE
I was diagnosed in 2004 with ALL and I've been coming to Birmingham Children's Hospital since then and I've got about six weeks of treatment left.
PORTER
Sixteen-year-old Jasmine is at the other end of her treatment regime and on her last course of chemotherapy. Her illness came to light when she didn't stop bleeding after her dentist removed a tooth. Her GP ordered a blood test which showed she had leukaemia.
JASMINE
Because I didn't know anything about leukaemia or really chemotherapy I didn't know what to expect, so I wasn't too bad. But then as it progressed and then the chemotherapy got stronger it sort of - it was worse then I think.
PORTER
What because you knew what it was like and you were dreading having it the next time?
JASMINE
Because I knew what it was like so I knew the sort of effects it had on me.
PORTER
Jasmine you're here in the outpatients and you've got some funny things on the back of both of your hands. Tell us about that.
JASMINE
It's EMLA cream. I'm having some chemotherapy in my hand today, so it's just a cream basically to numb, so I don't feel the pain.
PORTER
And that's been on for how long?
JASMINE
Probably about an hour, it needs to come off in a minute. I'll have an injection today and then I'll come back next month to have my final lot of chemotherapy.
PORTER
And I mean you're looking extremely well, what's happening in the rest of your life, are you back at school and everything is normal?
JASMINE
Yeah I'm back at school, I'm just about to do my GCSEs and then go to college.
PORTER
And what are you planning on doing at college.
JASMINE
Media studies.
PORTER
Media studies - very appropriate. Not medicine then?
JASMINE
No, not medicine.
PORTER
Looking back over the two or bit years what was the hardest stage for you?
JASMINE
I suffered quite bad with vomiting and things, being quite ill with the chemotherapy, so the first year of intense treatment was the worst.
PORTER
Well you're a very striking brunette now but I presume that wasn't always the case either - you lost your hair with the first treatment?
JASMINE
Yeah my appearance was quite bad as well, I sort of was really self conscious when you lose your hair and I lost about four stone in weight as well, so I was quite worried about that.
SCOTT
My hair started to fall out a little bit and I got - some of the chemotherapy made me a bit more tired and I found like I couldn't walk as quick as I used to, I used to keep stopping and taking breaths.
PORTER
Thirteen-year-old Scott is six months into his illness. He went to see his GP after he noticed that he was becoming increasingly breathless on exertion. His illness, and the subsequent treatment, have taken their toll. Scott's gone from being a keen sportsman to having to depend on a wheelchair to get about. But, despite being about to start his next round of chemotherapy, he's looking forward to getting back to normal.
SCOTT
I come to the school at the hospital at the minute, I'm trying to get walking again, so then hopefully I shall be going back to my normal school.
PORTER
So Andy you're Scott's dad, did you have an inkling something was seriously wrong?
ANDY
No, well as Scott said he was getting out of breath and we thought he was just thought - he was perhaps a bit anaemic, still didn't twig on until they actually - I come here and Dr Jarvis she says it could be leukaemia.
PORTER
Did you realise how treatable it was?
ANDY
No, I mean the consultant, the first thing he says, look first things is it is curable and treatable. It calms you down a little bit but didn't realise how long a period of treatment it was and what was involved obviously.
PORTER
So how have you managed to cope because presumably when Scott was in hospital for that first - for the first set of treatment I mean somebody needs to be here with him?
ANDY
Oh yeah, I mean luckily my job, being a milkman, I do early mornings, so it gives me the day to be here with Scott. When I'm at work he's with - mum's with him.
PORTER
So there's always somebody here?
ANDY
There's always somebody with him - there's always somebody who can be with him. I mean sometimes you forget about Scott's sister, she's got to live a normal life.
PORTER
Friends and family presumably rally round though do they?
ANDY
Oh yeah, we've got a good family, not a very big family but they're a good close family, they are, they do a lot.
PORTER
And Scott, when you're up on the ward here at the hospital, do the younger children come and talk to you about things, do they ask you things?
SCOTT
Sometimes if they're not sure what's going on they tend to ask why is this happening, why is that happening and then you tend to tell them and then they feel a bit more comfortable with it.
PORTER
Of course one of the first questions that will run through parents minds is how likely are we to be successful, what's the outlook and that's changed quite considerably over the last few decades?
LAWSON
Yeah, I mean the easiest way to look at it is actually the two different types of acute leukaemia because they've got quite different first of all treatments but also outlooks as well - outcomes. So the commonest, which is the acute lymphoblastic leukaemia, which is about 80-85% of cases, if you go back to sort of the 1950s when there was very little in the way of treatment around, hardly anyone survived childhood leukaemia, maybe 2-3% would survive five or six years from diagnosis but that would be it. Whereas now we take all children with acute lymphoblastic leukaemia, probably overall about 80-85% are cured, long term cure, leukaemia gone - doesn't come back. So it's a dramatic change in 40 years.
PORTER
What about for AML?
LAWSON
Well for AML again similarly back in '50s-'60s treatment was universally poor with no long term survivors, whereas now it is a more difficult disease to treat than acute lymphoblastic leukaemia but probably 60-70% long term survivors, cure rates, with them as well.
PORTER
What's actually involved in the treatment, once the diagnosis is made is treatment started immediately?
LAWSON
Yeah, within sort of 24 hours generally we would start treatment and the children are admitted to hospital and appropriate access to give them their treatment, so that means usually putting up a drip and that's all commenced as soon as they come in and yes they'd start treatment within 24 hours really.
PORTER
And the initial aim of treatment is what?
LAWSON
Well we talk about inducing a remission and what that means is that we give initial treatment, usually for about a month, so that when we go back and look at their blood tests and their bone marrow there's no evidence of the leukaemia there, so we're trying to induce a remission with the treatment.
PORTER
Because of course the difficult thing with leukaemia is that it's effectively a liquid tumour, liquid growth, there isn't a big lump that you can see, but effectively what you're doing with that initial bout of chemotherapy is shrinking the lump - if there was a lump it would be shrinking the lump down so that it can't be seen.
LAWSON
Yeah and then you look in the bone marrow to see that there's normal bone marrow now back from where the abnormal leukaemia cells were before.
PORTER
And that remission inducing treatment is chemotherapy?
LAWSON
Yeah.
PORTER
And that's working how?
LAWSON
Well it's basically a combination of different drugs given different ways - most of them intravenously, into a drip but others given by mouth, others given by intramuscular injections. And they basically are quite specific for leukaemic rapidly dividing cells, so they target those and kill them.
PORTER
But they have effects on ...
LAWSON
Side effects yes.
PORTER
... other parts of the body as well. So I mean I know it varies depending on the type of leukaemia and the child possibly but the sort of conventional regime, what sort of side effects would a child expect?
LAWSON
The common things are they often make the child sick, but we do have very, very good anti-sickness medication now, so that's thankfully not usually too much of a problem. It often gives children a sore mouth but again mouth washes and stuff that we have now makes that a lot better.
PORTER
And is this because the cells in the mouth are a rapid turnover as well, so they're affected by the chemo, a bit like the leukaemia cells?
LAWSON
Yeah and again the normal bone marrow takes some time to recover, so there's a time when we start treatment for leukaemia when in fact their ability to fight infection is actually lower than when they first started because they've had the leukaemia then given them more chemotherapy which kills any normal cells they've got left or certainly most of them, so their risk of infection is quite high for some time until their normal bone marrow recovers. Another common thing that we always say to parents is - and to the child - is that they will lose their hair.
PORTER
Now you wouldn't think it from the giggles, but Ian Ferris's daughter Grace, who will be one next week, has been in hospital for nearly half her life.
IAN FERRIS
Oh the symptoms originally were quite subtle, there wasn't anything that brought us to immediate attention thinking it could be so serious, she was just pale, not as much energy as she used to have. And we were just concerned parents but being diagnosed with leukaemia was beyond our wildest dreams, we just couldn't believe it was so serious.
PORTER
It must have been awful - an awful shock but I must say looking at - I mean here we are in her room here now, which is a little private room in a private hospital isn't it, painted orange with little cartoons all over the wall, and she looks very well.
IAN FERRIS
Oh yeah, I mean when she first diagnosed ...
PORTER
Smiling away waving there, trying to get rid of me already.
IAN FERRIS
When she was first diagnosed we were told what may happen in terms of side effects with the treatment and that the picture we were given we kind of - we believed that she was going to be - spend most of her time being poorly or there was going to be some bad times ahead but there has been times when she has been ill but on the whole she's been fantastic, she's coped with the treatment extremely well.
PORTER
Just looking at her now there's two things that are unusual, first of all she's connected up to a machine that's going in through her wiggly line that goes into her chest there, what are they giving her through that at the moment?
IAN FERRIS
At the moment she's being given a special feed called TPN, which feeds straight into....
PORTER
The liquid feed.
IAN FERRIS
Yeah it's like a liquid feed that runs over 24 hours and it feeds directly into her bloodstream because she's having problems at the moment with her gut.
PORTER
And she's also got a tube going into her nose which is taped up behind her ear, that's...?
IAN FERRIS
Yeah that's her ANG tube ...
PORTER
Gastric tube yeah?
IAN FERRIS
Yeah basically we use that to administer medicines or food, special feeds that are given to her.
PORTER
Well having been ill for a while and having two tubes in her isn't stopping her doing what all children - throwing everything on the floor here, she's happily full of beans isn't she.
IAN FERRIS
Yeah she is, she's - she's been an inspiration really to me and mum, she's been amazing.
PORTER
So what stage are you at, at the moment in terms of the future, what's the plan now?
IAN FERRIS
Grace's leukaemia lasts for two years initially.
PORTER
So she's at the remission stage and having ...
IAN FERRIS
She's in remission now.
PORTER
... having her repeated courses of chemotherapy now.
IAN FERRIS
Yeah and she's in her intensive block of chemo which lasts for six months but in Grace it's slightly been protracted because there's been slight delays with her treatment. And she's doing great, she's in remission, all the news that we have received has been extremely positive and we've just go to push on.
PORTER
And looking forward to getting her home?
IAN FERRIS
Yeah we can't wait to get her home and get on with our lives and do the things that normal people do with their children, that's ...
PORTER
Which will mean going back to work as well.
IAN FERRIS
Yeah. In a strange way I am looking forward to going back to work and just being normal.
PORTER
Although most people think of leukaemia as a purely childhood cancer it's at least 10 times more common in adults, as Caroline Swinburne has been finding out.
STATEN
My name's Hazel Staten, I'm in my early 50s, I have two sons - grown up sons - and my husband and a very old dog. I've always been fit and healthy until Christmas 2003 when I was diagnosed with acute myeloid leukaemia.
SWINBURNE
What was the first signs of any problem?
STATEN
I'd always been a very active person and I noticed I was getting breathless going up the stairs. I was feeling tired, but I just put that down to Christmas preparations and I do do a lot of work in my garden and I'd just had 10 tons of gravel delivered and I was moving that round the garden and just suddenly though oh I'm finding this so much harder than I normally would.
SWINBURNE
And we should perhaps say your husband is a GP, you yourself I believe used to be a nurse, so what did you diagnose yourself as having, what did you think the problem was?
STATEN
At that stage I didn't think it was particularly a health issue, just really a fitness issue.
SWINBURNE
So what did happen to make you think it was more serious?
STATEN
I took my pulse and found it was irregular and then I said to my husband: Do you think you could just feel my pulse? And he felt it and I suppose he'd started putting two and two together, thinking of things I'd told him, and he said I think you'd better go and see your GP.
SWINBURNE
So when it was eventually diagnosed as leukaemia what was your reaction, what did you think?
STATEN
I was absolutely stunned, it didn't - it didn't really occur to me that that was in the frame, I don't know why it didn't but it just didn't. And when I said: What are my chances? I was horrified to find that my chances of survival were 40%.
SWINBURNE
So what treatment - what did they propose?
STATEN
It was a very, very long course of chemotherapy, which involved being an inpatient, in total it was about five months, and you're kept sort of in isolation because you're so at risk of getting infections and it's the secondary infections that really can kill you. You're in for usually about a month and then you come home for maybe a week - week or 10 days - to sort of get your strength back and then you're back again for another course.
SWINBURNE
It must have been really hard to cope with?
STATEN
It's unbelievably harsh, it's a very, very tough - very tough course of treatment.
SWINBURNE
And how did it go?
STATEN
Well it went reasonably well in that I achieved remission but I was only in remission for six months, just over six months, because sort of just after the following Christmas the leukaemia had come back. I thought it was the end really, although I'd - I knew that by this time I'd had tests and - well my brother had been investigated and he was a match but I knew that a bone marrow transplant isn't without its risks. You have a course of very, very aggressive chemotherapy and that sort of kills off all the - your bone marrow, so you're very vulnerable. So you have that and then you go in for the transplant and the actual procedure for that is very uneventful. My brother's stem cells were collected and that collection of stem cells is like - in a blood transfusion bag and when it was my time to receive the stem cells they're just given like a blood transfusion and it's over in about 20 minutes. So it's not a big event, well it is really but you know.
SWINBURNE
And then your body has to accept them presumably?
STATEN
Yes and that's really when you know you're hitting the danger zone.
SWINBURNE
But it went okay?
STATEN
Yeah, it's tough, it's very tough, you know you have lots of problems but I got through them.
PORTER
Well bone marrow transplantation - which involves killing everything in the patient's blood producing bone marrow, cancerous and healthy cells alike, and then replacing it with new cells from a donor - is used in children too, but, as in Hazel's case, only when conventional treatment fails.
Something that researchers are hoping a new technique called MRD could help make less likely. MRD stands for minimal residual disease and is a much more sensitive way of pick up cancer cells hiding away in the bone marrow of someone in remission, as Sarah Lawson explains.
LAWSON
When we usually define someone as being in remission from leukaemia, the conventional definition is that when you look down the microscope you can't see any leukaemic cells. But we know that that's only got a sensitivity of about 1-5% which means that you still could have disease present below 1%, so you could say we looked down the microscope and say yes you're in remission but you could have .5% disease, .05% disease because we can't detect that down the microscope.
PORTER
So all children in remission are not equal?
LAWSON
No because they're in a haematological or what we call morphological remission because we're looking at it down the microscope but not necessarily a more sensitive remission. And these newer techniques can detect levels lower than that. The conventional way of looking for minimal residual disease is using molecular PCR techniques and they have got a sensitivity of one in a million, so they can detect one leukaemic cell in a million normal cells.
PORTER
And how's the actual technique working, how does it highlight that cell?
LAWSON
They take a sample from the patient diagnosis and they look for particular gene rearrangements in that leukaemic cell. And then when you look in a remission sample a month into treatment they then extract the DNA from the cells in the bone marrow and look for that particular rearrangement that they identified at diagnosis and because it's DNA and because of the amount of material they can look at they can get down to a sensitivity of one in a million.
PORTER
So you can detect ongoing disease in people who are in conventional remission but how does that help you, what's the advantage of doing that?
LAWSON
I mean that's all come back from previous studies where MRD was analysed and they found that if your MRD level was greater than .01% then your risk of relapse was about 40-50%, whereas if your MRD was less than .01%, which is defined as negative, you had a less than 5% chance of relapse. So we know that it actually affects the outcome.
PORTER
So you can predict that somebody with a higher score is more likely to have problems in the future, so how does that change your management of them?
LAWSON
There's a study currently going on in the UK and basically what it's looking at is in those patients who are MRD positive, so we know they've still got some levels of disease left, albeit low, does increasing the intensity of treatment improve their outcome, so reduce their relapse rate from 40-50% to lower but obviously without causing more problems because obviously the more intensive treatment you give the more potential problems you can have and you can actually end up with patients dying because of the complications of treatment, so you've got to make sure that increasing the intensity of treatment is actually going to have a beneficial effect. So the current trial is looking at those patients who we know have got a high risk of relapse and actually doing a randomisation, so half will be being treated on a higher intensity treatment and the other half we treated conventionally and then hopefully in three or four years time when the trial has got enough patients recruited we'll be able to see whether actually doing that makes any difference.
PORTER
And then once the child has finished their treatment regime, we talked about follow up, what happens then, how often are they coming back?
LAWSON
Generally they're seen about monthly for the first 6-12 months. The reason for seeing them so frequently is that the highest risk of relapse with the disease coming back is soon after treatment, so the first six months is the highest and then 12 months.
PORTER
But the bigger distance you put between you and your ....
LAWSON
Yeah the safer you feel yeah. The risk of relapse is very low after one year finishing treatment but it's still there and I think no one would be entirely confident to say you've got the all clear until you're about four or five years off treatment, so it's quite a long time follow up.
PORTER
Paediatric haematologist Dr Sarah Lawson ending our special report there from Birmingham Children's Hospital on recent developments in the treatment of leukaemia.
Next week's programme is all about shoulders, including the latest thinking on treating problems ranging from dislocations and torn muscles, to frozen shoulder and arthritis.
Ends
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