Bone marrow is a spongy material inside the bones which produces blood cells from stem cells. Stem cells are immature cells that develop into mature blood cells which are then released into the bloodstream. A stem cell or bone marrow transplant allows higher doses of chemotherapy to be used than usual, which may improve the chances of curing some types of leukaemia or lengthening remission. Very high doses of chemotherapy, sometimes with radiotherapy (Total Body Irradiation), are given to destroy the leukaemic cells in the bone marrow. The marrow and immune system are then ‘rescued’ with an infusion (drip) of stem cells either from the patient (autologous treatment) or from a donor (allogeneic transplant).
Stem cell transplants are complicated and risky procedures producing many side effects and possible complications. Patients remain in hospital isolation for at least a month afterwards, during which time they are vulnerable to life-threatening infections and at times will feel very ill. Transplants are offered only to people who are considered strong enough to withstand the physical and emotional demands. The age of patients considered for transplants is slowly increasing and a small number of patients over the age of 70 are now receiving allogeneic transplants.
Claire is married with 3 children aged 17, 11 and 9. Ethnic background: White British.
Oh yes, I had to prepare for transplant and I had to be quite well. I couldn’t, you know, if I’d had flu or something, and I tried to steer clear from people who were ill, or an environment where I might pick something up. And I had to prepare, I had to have lots of tests, lung function tests and - oh I can’t even remember half the tests that I had - CT Scan, yeah, it was quite a lot of tests, but they were OK, it wasn’t too stressful really, and by then I was so familiar with my surroundings that it wasn’t a big deal any more.
So then what happens, you have your tests?
And then you, what, when I had the radiation you mean?
Yeah I mean, so they do all these tests, why do they do those?
Just to make sure you are well enough for your transplant really. Because the type of transplant I had was, you know, it was the big one and you have to be under 40, is the cut off point, because it is quite gruelling and you have to have radiation, and then chemo, and then your transplant, so you really have to sort of go, your bone marrow all has to be killed off as far as I know, I’m not an expert.
Finding a donor
Having reduced the leukaemia to the lowest possible level using standard chemotherapy (see ‘Chemotherapy and how it is given’) and/or radiotherapy (see ‘Radiotherapy’), stem cells are collected from the patient or donor. Where possible, brothers and sisters (siblings) are tested for their suitability to be a donor as they are likely to be the best match. There is one chance in four of finding a suitable match among siblings. Parents are not usually a good match but may be tested if no other donor is found. When no relatives are suitable an unrelated match will be sought via the National Blood Transfusion Service or charity registers such as the Anthony Nolan Trust.
Bone marrow transplant used to be the best chance of cure for patients with CML. Since around 2000, treatment with imatinib (Glivec) or similar drugs has resulted in a dramatic change in the outlook for people with CML so that transplant is now only used for a minority of patients (see ‘Biological therapies’). Several people we interviewed who were diagnosed with CML before imatinib (Glivec) became widely available were considered for a transplant. When no donor could be found for Chanelle her doctors were initially unsure how to treat her chronic myeloid leukaemia (CML). She was then invited to take part in a trial of a new drug, imatinib (Glivec), which she has taken ever since. No donor could be found for another woman with CML but after obtaining a second opinion it was agreed that a transplant was unnecessary. Despite her brother and sister both being a match, a third woman with CML decided not to have a stem cell transplant and obtained imatinib (Glivec) before it was routinely available in the UK. Frances, who had ALL, had cut her ties with her family so didn't want them to be contacted about bone marrow donation, but in the event she didn't need a transplant. Eight years after her chronic lymphocytic leukaemia (CLL) diagnosis, it was suggested that Beverley might need a stem cell transplant in the future so her siblings were tested but none were a match.
Beverley is a retired medical secretary. She is married with three adult children. Ethnic background: White European.
My sisters were tested before Christmas and it took two and a half months before they receive the results. You’re not allowed to receive or be told the results in any way. It’s up to the person concerned, whether they are possible donors or not, to tell you. My sisters contacted me and both told me that neither of them were possible donors.
So I now know that I haven’t actually got a family donor. And I went back to see the consultant again at the hospital who explained that she would wait until things got any worse before putting me on a donor list.
The one thing that came out from all of them [her children] was that why if I could have a transplant why can’t they be considered? And because of genetic problems they’re not allowed to be considered as a possible donor. But they obviously feel that it’s something that they would love to do and they would all love, they all have said the same things, and they obviously feel quite hurt that they cannot be considered. I had the same reaction from my best friend who wanted to be tested but they’re not allowed to be individually. It’s only siblings that are allowed to be tested individually for a possible transplant. If friends or even if the children wanted to be tested they have to just go to an Anthony Nolan session and be tested via Anthony Nolan sessions, and then they could be selected for anybody. So they’re not considered for their own family. So yes, it was quite a hard time telling them really.
The one person that I know would possibly have been, they actually say that one in three siblings are possible donors, and I actually had a third, an elder sister who died quite a few years ago, and I know, I’ve got a gut feeling that she would have been the possible donor if anybody. Because it just, I think that’s fate. But you always look at things like that afterwards.
It was hard but I made it quite light with my sisters as well. And yet both of those are both qualified medical personnel so they know the implications of all of it. They became quite anxious with wanting to know the results, to the point of actually ringing my local hospital to see if the results were in after two or three weeks, and yet they’d been told quite clearly that it may take two to three weeks, it may take up to six to eight weeks to get the results through, and with it being the Christmas period I’d sort of said, “Well, it’s going to take even longer.” And they phoned the hospital after two to three weeks just to see if the results were in, so they were quite anxious about it.
Some people were lucky to have a perfectly matched sibling. Both Deb and Aley had a brother in the Indian subcontinent who travelled to the UK to donate their stem cells. One of Elizabeth’s brothers was initially thought to be a match but this was later discovered to be a mistake. Her mother insisted on being tested and, unusually, was a perfect match. Mark’s mother was a partial match and her stem cells were frozen because his immediate need for a transplant receded. Some people with no suitable relatives found a match with an unrelated donor; Ann had a choice of two.
Elaine is a housewife and mother. She is married with two children aged 9 and 10. Ethnic background' White Scottish.
How did your brother feel about being a donor?
He was delighted, he was absolutely delighted that he was a perfect match for me. But he’s terrified of needles, terrified of hospitals, needles especially. And when he first went up to get tested, it was just a simple blood test but my brother just about passed out. They had to lie him down. His blood pressure was sky high. But he got there eventually.
He was delighted that he could do this. But they kept asking him right up to the very end until they were even taking him into the operating theatre, ‘Look. Are you sure you still want to do this? You don’t have to do it. You can back out.’
And obviously he was like, ‘No. This is my wee sister.’ And he was sore after it. He was really sore after it for quite a wee while but no, absolutely delighted that it went the right way. Everything went the way it was supposed to go.
How did they take the bone marrow out of him?
Just the same way they did with me. They went in through the hip bone at the back but they had a surgeon at either side and I think they took three different lots, I think it was about, it was a litre and a half of bone marrow they took from him. So obviously he was knocked out at the time.
Gilly is a therapist and yoga teacher. She has no children. Ethnic background: Irish/American / Turkish/English.
They’d put me up for a bone marrow match, so I left and that was a very strange period again between knowing that the drug treatment, which is very intense, could no longer halt the leukaemia. So it was really a question of, again, in this other world of thinking, well, at some point if a donor comes up then I will have life, and if a donor doesn’t come up then I will die.
So the call came through that they’d actually found a donor and I discovered it was a male donor, a foreign male donor. They won’t tell me which country. And again I had to go back for the various kind of procedures, which is just exhausting. I think the one thing I can say is the tiredness of, however much you adore the hospital, and you have to go for your MRI scans and everything, it goes on and on and on, the actual exhaustion of just waiting.
And I’d also like to say at this point, that as a white woman I had a seventy per cent chance of getting a matched donor, but anybody within an ethnic minority in the UK has only a twenty per cent chance of getting a matched donor. So anybody from the ethnic minorities who is watching this who is under forty just donate your bone marrow. It’s really simple, and contact the Anthony Nolan trust.
Harvesting stem cells
Stem cells are harvested (taken) from patients and donors in two ways. Some had liquid bone marrow drawn into a syringe by inserting a needle into the hip bone (pelvis). This is done under a general anaesthetic so people we spoke to found it uneventful, but felt bruised and sore afterwards. The cells are mixed with preservative and frozen until needed.
More commonly people are given injections of a growth factor (G-CSF) to stimulate production of stem cells and make them spill over into the bloodstream, followed by extraction via a cannula using a cell separator machine. Most people spend about four hours connected to the machine through a cannula, but for some it took longer or the procedure was repeated on a second day to obtain enough cells. Some people said the G-CSF injections stung. Mark said that a nurse injected the G-CSF too quickly the first time causing painful bleeding. One man’s wife did the injections for him at home. He was disappointed when his harvest was cancelled because there were not enough stem cells in his blood.
Neil is an accountant. He is married with 2 children aged 17 and 15. Ethnic background: White English.
Okay. Then at one point you harvested your stem cells for a possible transplant.
Can you tell me about the harvesting process?
As I said, I was sent up to, I was given the option of going to a hospital locally who had just started this practice, or going to London. I decided that actually I would prefer to go to London where it was a routine procedure as opposed to a newly established procedure. And effectively what happened is you’re really not aware of any of it because you are under a full anaesthetic. You go into the operating theatre and they drill four, five, six holes into your pelvis.
And they’re going into the bone, into the marrow, and then taking out the bone marrow. And that is then cleaned and stored in an ice, however, refrigerated, and that’s held for five years. And as I say, I looked at it as an insurance policy. Wasn’t going to need it. I knew I wasn’t going to need it. I was convinced I wasn’t going to need it but as there were no other people I knew who were a match, because they’d done the test on my brother, who was the only sibling I had, and he wasn’t a match. And the chance of being a match was only one in four so it’s not as high as you might have expected. And so I thought, ‘Well for the sake of a couple of extra days in hospital you’d be kicking yourself in years to come if you had a relapse and you had needed bone marrow transplant and you’d had the opportunity and you hadn’t done it, so why not?
Had the harvest, came away, I think I’d describe it, I mean I went up by train and I came back by train and it just felt as though somebody had kicked you. They did say I’d feel as though I’d been kicked by an old, by a mule or a horse. And again I think I was relatively fortunate because it was an extremely old nag that had kicked me rather than a young frisky thing.
Age at interview:
Age at diagnosis:
Julie is a clerical worker in the NHS. She is married with no children. Ethnic background: White British.
What was it like having the stem cells harvested?
Painful. Well we started off in this room and it was in my left arm. And I was on a bed and my arm was outstretched like that, and a pillow was underneath, and a big needle was in my arm. And they said, ‘Whatever you do don’t move your arm.’ And I said, ‘How long for?’ They went, ‘Well, eight hours.’ And it was like a huge tape recorder, if you like, and what was going around the tape recorder there and round to this side here, and what they didn’t need went back in to me. And what they did need went up into this little bag. But they found out after a while that it wasn’t coming out quick enough. And the pain, obviously, of the big needle in my arm, the heat from the light and my arm being outstretched like this, was incredible. So I said to them, ‘It’s not going to happen. It’s not going to work.’
So what they decided to do was to put another line in my leg but this time the needle being yea big. So again they got the doctors up. Laid me out flat. Loads and loads and loads of local in my leg and they cut my groin and they put it in. And once they did it and they sat me up, obviously this line was a lot bigger, and the blood was flowing out a lot quicker. But because they didn’t get enough in the one day then I had to go back for eight hours on the second day again with the line in the leg, which they let me keep that in overnight. And so it was sixteen hours over a two day period.
And then what they did is the little stuff in the bag they needed to go and take that away and to test it and to see that it had everything that it should have, everything that they wanted, and if they needed more then we had to do it again, if they didn’t then obviously we were good. And after the end of the two days they came to me and they said, ‘We think we’ve got enough.’ And I thought, ‘Oh thank God’, because I couldn’t go through that again. So literally for eight hours straight on a bed and not moving.
Did you have to have injections beforehand to boost your stem cells?
What were they like?
Very painful. They came every day and they give me a shot in my leg. And one day my leg had this lump come up and really big bruise. And I just thought, ‘Oh my God. What have they done to me?’ And they used to come in with this blue tray and I just knew what that blue tray had in it. And I’d be like, ‘Oh here we go.’ And it really stung like crazy, but again they told me, ‘Stick with it. We know it’s painful but it will all do good in the end for when we do the harvest.’ And I kept on thinking, ‘Well if that’s good then that results in a good harvest which will result in it being frozen, cleaned and given back to me and that will be getting me better.’
Stem cell harvesting is followed by the so-called ‘conditioning regimen’ of high dose chemotherapy with or without total body irradiation (TBI) given to the patient over a few days. High dose chemotherapy is given intravenously via a central line, like standard chemotherapy (see ‘Chemotherapy and how it is given’. For details of TBI see 'Radiotherapy').
Conditioning regimens cause unpleasant side-effects such as hair loss, nausea and vomiting, diarrhoea and mouth ulcers (see ‘Unwanted effects of treatments’) and usually leave the patient infertile. Two people had a reduced intensity transplant, which uses less chemotherapy or radiotherapy than usual with the aim of reducing transplant-related complications. Reduced intensity transplants are not suitable for everyone.
Transplanting stem cells
After the conditioning regimen the stem cells are given to the patient through a drip in the same way as a blood transfusion. It usually takes only a short time. People found this very quick and an anti-climax after the preparation. Elizabeth had an allergic reaction to the preservative.
Julie is a clerical worker in the NHS. She is married with no children. Ethnic background: White British.
It took sixteen hours for them to take it out but it took two minutes for them to give it back to me, because it was this tiny, tiny, tiny, dinky bag, and within one injection or two injections, bosh, it was back in me and I was like, ‘Is that it?.’ You know, I suffered hours and hours and hours of agony and it was over with inside two minutes. And it was like, ‘It can’t be, it needs, surely there was going to be a lot longer than that.’ But no, within two minutes it was all back and it was all over with. But the smell in the room, can’t stand now corn on the cob. It stunk to high Heaven. And I used to open the door and, whoa, and it hit you. And the only thing it was like is sweet corn. Can’t go anywhere near sweetcorn now. Stunk. Vile. But two minutes and it was over.
During the first few weeks after the transplant, the people we spoke to had been very poorly and remembered little of the experience. Julie remembered 'doctors coming in and out and people cleaning me but other than that it’s just a total blur’.