Talking about stem cell transplants podcast transcription

Hello, my name is Anne Hook and I work at Lymphoma Action and I'm delighted today to be joined by John Murray, who's a nurse clinician in bone marrow transplant, and Angie Leather, who's the lead nurse for transplant and haematology clinical nurse specialist. Both John and Angie are based at the Christie Hospital NHS Foundation Trust in Manchester in the haematology and transplant unit. 

Angie: Hi, thanks, Anne. Yes, so I'm Angie and I've worked here the Christie for 26 years and, up until very recently, I was a transplant coordinator organising the bone marrow transplants for patients. More recently, I've just got a new role in leading the team, so I'm currently leading the apheresis transplant coordinators donor coordinator teams and, obviously, the nurse specialist that support the patient going through any form of cancer treatment for our haematology patients. John? 

John: Hello. Thanks for inviting us, Anne, really pleased to be here today. My name's John, I'm a nurse clinician, so I've got a slightly different title. So I did a masters degree several years ago in advanced practice and I'm now able to review patients in an outpatient setting, assess them, diagnose them, treat them within the setting of allogeneic stem cell transplantations. So I pick the patients up at the point they were discharged from their transplant and I look after them then, moving forwards from that point onwards. We've got some people who first had their transplant in 1982 that we still look after here on a yearly basis, we still follow them up. 

Anne: John and Angie, we have so many calls to the helpline that ask about stem cell transplantation. But I want to start with a very basic one: autologous stem cell transplant and allogeneic stem cell transplant: those names sound quite similar and I know people often get confused by them. 

Angie: Well, an autologous transplant is from the patient themselves and an allogeneic transplant is directly from a donor. So the difference between an auto is themselves and an allo is a donor. 

Anne: Okay. Can I ask you, John, donors, where do you typically find a donor for an allogeneic stem cell transplant? 

John: I think the first place to look for our donors is to family members, so brothers and sisters are the first port of call. So we'll see if somebody's eligible by taking samples from the patient themselves in the first instance to find out what they look like at the genetic level. And then we'll approach them and ask them, 'Have you got brothers and sisters?' And, if they have them, we will then, through Angie's team, approach the siblings and ask them a lot of questions in the first instance to see if they're fit and healthy enough to be able to be a donor, because it's quite a complicated process to work our way through. Once we think that they're eligible and they satisfy those criteria, we'll ask them for a blood sample at that point and then we'll do the typing to see whether or not they actually match their sibling. And, if they're not a match, there are lots of other avenues that we can explore, whether that's somebody who's completely unrelated and looking on places like Anthony Nolan, which people may have heard of. Then we start looking elsewhere on the planet, Europe and across into Americas to see if there are donors that would be further afield. And the alternative donors to that would be umbilical cord donors and now, more lately, we're looking at something called haplo transplants where we're able to use somebody's children and also their parents, which is a lot different to what we used to do maybe ten or fifteen years ago. Haplo transplants weren't really popular at that point, they were very difficult to undertake but the conditioning treatment that we've now devised helps those transplants to work. 

Anne: You said people need to be relatively fit and well if they're a donor, can I ask you why that is? What's involved that would mean that that fitness is important? 

Angie: From a donor perspective, the procedure for the donor, actually, is not that arduous. However, we don't want to put the donor at any harm so we would do medical assessments on all the donors before they are deemed fit. So we obviously don't want anybody that's had a previous cancer, that might be having infective complications, and that's to protect both the patient and the donor. We've obviously got to give some form of, you know, mobilisation agent, so usually G-CSF to the donors, and that's given over four days. That can cause, you know, minor issues with sometimes, like, bony aches and headaches and things. So we just need to make sure that there is nothing that would contraindicate those injections, really. 

Anne: In terms of donors, if you haven't got a sibling or a family donor, roughly how long could it take to find a donor on somewhere like the Anthony Nolan lists? 

Angie: Currently there's about 36 million donors worldwide, the majority of donors that we find are either UK donors but we also do use quite a lot of German donors as well. Obviously, the ethnic minority groups are much more difficult to find donors for because they just don't have the unrelated registries that the Europeans do, really. 

Anne: If I can move on and ask why a healthcare professional might consider that a stem cell transplant is the best option for someone with lymphoma? 

Angie: Yes, so obviously, when the patients are seen by the clinicians within their referring centres or their clinical centres, it will depend on how well they respond to the treatment, their induction chemotherapy. So somebody with a Hodgkin's lymphoma, for instance, may never need a transplant, their initial treatments may do very well and they may go into remission and, actually, remain in remission. Unfortunately, as possibly a lot of the people listening to this podcast may be aware that an autologous or an allogeneic transplant is required is possibly because the disease has come back and it isn't helped by standard chemotherapy alone. So they need to be able to consolidate it with a bigger dose of chemotherapy. So much so that, you know, that would destroy the bone marrow that they've got but we could rescue them with some cells and that tends to be the reason that the medical teams would refer into a transplant centre. 

Anne: Can you explain what the process of having a stem cell transplant is? 

Angie: For an autologous transplant, what would usually happen is you'd be referred to a transplant centre, you'd be seen in clinic and have the discussions with the clinicians. And then, if we felt that this was the right way to go, we would then do a medical assessment, so that would just be, make sure that you were fit for the treatment and we would then try and get some stem cells from you. 

So stem cell collection, or you might hear it as mobilisation, that basically means that we give usually some chemotherapy, sometimes off the back of perhaps your consolidation or your salvage treatment. We then give a dose of injections called G-CSF and we continue those until we've found that there were enough stem cells in the peripheral bloodstream because the stem cells are actually made in the bone marrow. So, to get them in the bloodstream, we give this injection of G-CSF and that mobilises them out of the bone marrow and into the bloodstream so we can cream them off, if you like. That injection can sometimes cause, sort of like, some bony aches and pains, so some of our patients will come in with a sternal, like a pulsating pain in the sternum or in the hip bones. But actually, it's usually a good indicator that, hopefully, those stem cells are there in the peripheral bloodstream. 
 
We can then attach the patient to the machine and it's a pump process and it's done by centrifuge. And the centrifuge just separates it into layers and, once that procedure's done, it takes around about four to six hours, the patient can usually go home. The cells are taken to the labs and then they're frozen down and stored in a big freezer or a big tank until the patient's then ready to come in for admission. So that's usually what happens for a stem cell collection, also known as apheresis, and then obviously bring them back in for their admission and the chemotherapy before they have the cells back. 

Anne: Is it different for an allogeneic stem cell transplant? You've obviously got to get your donor, haven't you, at the beginning, as well. 

Angie: Absolutely, so for an allogeneic process, the donor will go through that without the chemotherapy, they'll just have the injections for a few days beforehand to still mobilise the stem cells. 

For the work up for an allogeneic patient, we would do some bloods, which usually shows as a DNA profile and that's called tissue typing. And every single one of us has got a different fingerprint, if you like, and that's sometimes where it's challenging to find those unrelated donors or sibling donors. So a sibling donor, you've got a one in four chance of one of your siblings matching and, unrelated donors, it's obviously like finding a needle in a haystack. So therefore, your tissue typing, once we've got that profile of that DNA, is then entered onto a big database and that database then hopefully churns out potential matches for you. And then the tissue typing centre, so ours is done external to the hospital. So that centre calls in donors for bloods and then they'll match them against the patient. And we'd usually be looking for a ten out of ten donor, so that's ten points on that profile of your DNA which we would be trying to identify. 

Anne: After that collection, people then come in and receive either their own cells back or the donor cells. And we hear quite often on the helpline that it's all a bit of an anticlimax. They're expecting it to be a really major event. Can you explain what it's like? 

Angie: Yes, so once a patient's admitted into the hospital, they're usually given, sort of, about 5 - 6 days of chemotherapy, depending on the regime that they're having. And then, at the end of that, usually about 24 - 48 hours after, they’ll get the stem cells back and, you're right, it's a big anticlimax in some respects because the cells are like a bag of platelets, so quite small, probably around about 100 ml, sometimes a little bit more depending on how much has been harvested. 

Anne: Can I ask, is it a straightforward decision on which is the most relevant or appropriate type of stem cell transplant for someone, and do individuals have any say in this at all? 

Angie: So, yes, individuals, of course, they have a say, and any treatment that we give is what the patient wants, but that's given via guidance from our clinical teams to make sure that we're actually doing what's the best for that patient. And I can think of quite a few of our own patients that, you know, have come through to our clinics for possible transplantation where there's discussion between autologous transplant, which is a much safer, much easier type of treatment, over an allogeneic transplant, which has got higher risks involved with it but possibly better long-term outcomes. And those are the things that are quite challenging both to clinical teams, but obviously to the patient to make a decision of what is the best for them, really. 

Anne: Are there other factors at play here like the age of the person, maybe other health conditions? 

Angie: Yes, so it does go back to their wishes, but yes, of course we would want somebody that's got, you know, a good cardiac function for both auto and allogeneic transplants. Age is a factor, although we will still treat patients here at the Christie from the age of sixteen up to the age of 70 for both types of transplant, fairly standard. But really, it does come down to performance status and how well we feel that the patient will do once we've got a lot of the information gathered from their workup. 

Anne: John, can I ask you, what's the risk benefit of having an allogeneic as opposed to an autologous stem cell transplant? 

John: The major differences between the two are around the risks of actually receiving the transplant itself. So the chemotherapy that you have with an autologous transplant and the side effect profile that you'll get from that of sore mouth, drop in your blood counts and the risk of infection versus the chemotherapy that we would give for an allogeneic stem cell transplant with or without radiotherapy, the doses are a little bit different. And the depth of dropping the counts is significantly different. And what that does is that leads to different complications, so the chance of things going potentially wrong during an autologous transplant, and it's something that's called a TRM or a transplant-related mortality, and most places will give that around somewhere between 1% to 3%. So that means that, for every 100 autologous transplants that you perform, between one and three patients won't survive 100 days after having the transplant. It's a small number but that's a real number and that is, you know, between one and three people, out of 100 that you do. Now, if you take that for the allogeneic stem cell transplant population, people are quoted a TRM, a transplant-related mortality, of around 20%. So that means, out of every 100 allogeneic transplants we do, 20 people will not survive 100 days after their transplant. Now, you need to take a second to think about that, and those differences, one, two or three versus twenty, is a big, big difference. And that's why part of the conversations in transplant discussions around having an auto or having an allo are so difficult because the risk of having the allo is so high but the benefit of having that is putting you into a remission and that you won't need any more treatment ever again. And that's a really big risk but a massive payoff versus the other side that is a small risk but the potential payoff might be that you might need more chemotherapy in the future or you might need an allogeneic stem cell transplant in the future or you might need CAR-T therapy in the future, but you might need something else. 
 
So for you as an individual, it's, 'What risk do I want to take now to the benefit that I'm going to get out of it and is it worth it for me here, sat now, in clinic, in front of you, saying, "This is a really small risk but the benefit isn't as much versus this is a massive risk but what you might get out of this is a potential cure."' 

It's a really difficult conversation and for people to come to terms with that as well we say, you know, people come backwards and forwards to clinics several times because these are not decisions that you make lightly. You've got to talk with the rest of your family, your support network of what you're about to go through and can you get through it with all of the people around you supporting you to get you through it. So there's an awful lot of toing and froing, people come back to clinic, you know, two, three, four times for these discussions. It's not a one-shot deal, you walk in, somebody says, 'Oh, I think you should have an allo graft,' and ten minutes later, you go, 'Yes, thanks very much, I'll see you next week.' It kind of doesn't work that way. There's an awful lot of backwards and forwards and discussions, certainly with the nursing team, as the transplant coordinators, I used to do it myself many years ago. You take a lot of phone calls from the patients saying, you know, 'I was in clinic last week, can I just go through a couple of those points again? I'm really not sure about what the risk benefit ratio of having my auto in my situation is.' And that's what it comes down to, we can give people figures, unfortunately, for everything that we've done up until the point where we've done you. So I can tell you about the 3,000 patients that we've done already: what risks they had and how they got through their transplant, but I don't know what's going to happen to you as an individual. Because you haven't had it done yet. I can tell you what happens to you in a year's time because then we've done it. So what we're doing in medicine, most of the time, is we're having a best guess. 
 
We're using that best guess from best available evidence, best available information we've got, our own experience, and the experiences of everybody else that's done transplant across the world. So you know, the million or so transplants have been done in the last 60, well, 62 years. So you can look at all of those and say, 'Well, we know with this particular kind of disease, the chance of you getting into remission is 30%, for instance.' Are you going to be in that 30%? I don't know. We only find that out after we've done the transplant and that's why it becomes so difficult, because we give people these numbers and we say, 'We can cure this disease and I hope that you are going to be within that cure but I can't guarantee that, it might be that, for you, your disease comes back despite giving you full intensity treatment and giving you an allogeneic stem cell transplant’. It might not work for you. 

So those conversations are really, really difficult and I think, if somebody doesn't come out of that conversation they've had, that first meeting, certainly with- you know – our  consultants here, and they're not a little bit upset, we really haven't got the point across. Because we're trying to really, really tell you how difficult this is going to be. We're not absolutely 100% sure what's going to happen but we can give you the best available information that we've got and try and guide you through as best as we can. So it is really, really difficult for patients. 

Anne: There's a lot to consider here, and do they get a lot of support in helping them to make that decision? 

John: Yes. 

Angie: Yes, absolutely. I mean, we would never push anybody down the route. And some of our patients are really undetermined, unsure of which way is the best way for them to go, our consultants will say, 'If you're not sure, do the safest option, so go down an autologous route, if this is the way that you feel is the best option’. 

And I think this is particularly relevant in lymphoma patients where an autologous transplant, so a transplant from themselves, is gold standard treatment. You know, usually that's what they would indicate for patients with lymphoma, however there are some circumstances where patients have a difficult disease, where the treatment isn't working quite as well as we'd hope to then think that, obviously, an autologous might not do quite as much as what we would want it to do. And, therefore, we're looking at an allogeneic option at that point, really. 

Anne: If your team have found a donor and everything's looking like it's going in the way of an allogeneic and the patient then decides, 'Actually, I've changed my mind, I really would prefer to do an autologous.' Is that doable, can they change their mind? 

Angie: Absolutely. Here, that's not a problem. So if the patient's a little bit unsure and we think that they might want to go for an autologous transplant, then we'll try and mobilise some stem cells, so we obviously need to get their own stem cells banked for them. If we think that an autologous is still an option, even though perhaps an allogeneic is on the table, it will sometimes depend on their end-of-treatment PET scans. If their end of treatment PET scan looks really good and they've gone into a, you know, a reasonable remission with a salvage treatment then an autologous transplant is still very much an option. 

Anne: And can it work the other way around, if they, all the way along, have said, 'No, I'm going to go for the autologous,' and then, as time is getting closer, they say, 'Actually, I've really decided that I'm going to go for the allogeneic’. Is that possible as well, or not so much? 

Angie: It is possible, yeah, of course it's possible. And obviously we would need to, sort of, think of timelines as well, because if it was just last-minute decisions then, as we've said earlier, sometimes we find donors for some of our patients can take weeks and sometimes months, which is giving potential time for the disease to come back and for, you know, for further treatment to be needed. 

Anne: When you listen to the news, you hear about waiting lists for things like hip replacements, knee replacements. We sometimes get calls from people saying, 'I can see a stem cell transplant is on the horizon.' Is there a waiting list for that? 

Angie: I guess it depends really on, sort of like, your centre that you're going to. Currently, here, we would have, sort of like, a waiting list of around about four to six weeks, something like that. But obviously, if then, in that time, we're still trying to find a donor, once we've got a donor identified, if it's an unrelated donor, really, a turnaround time to get that donor from the point that we have it reported through to cells being given is at least four weeks, really. 

Autologous transplants, again, it'll depend on capacity and your centres but ours is usually around about four to six weeks for transplantation. But what we would really want to do and what usually happens quite quickly here is that the patients are referred in a timely fashion, so they're perhaps not at the end of the consolidation treatment or the salvage treatment, so we're seeing them early so that we can actually plan either the harvest or we can plan donors. So we're not doing it all at the end of treatment, it's doing alongside the treatment pathway. 

Anne: Can I ask, John, what can people do to physically, practically, emotionally prepare themselves for a stem cell transplant? 

John: I think this is really quite important, it's something that I talk a lot about, is getting people fit both pre, during and post-transplant, really. It's those three areas that are really important. So, most of the time, at the point you've been originally diagnosed, you're feeling pretty rotten. You've then been through several cycles of chemotherapy and you're probably feeling even worse at that point. And then you start to recover and we're thinking, 'Okay, this person's coming through for their transplant, what can we do to optimise that person?' The new word, I suppose, is prehab, and it's really all about getting yourself ready to make yourself the best person you can so you can get through your transplant so that when you're discharged on the other end, you are still the best person you can be so that you can then recover after your transplant. So it's all about putting hard work in upfront, really, if you just let people bumble along and don't do anything with them, don't tell them things, they'll turn up for transplant and be like, 'Oh, crikey, right, so I'm in this room for how long, a month?' And all of a sudden, you're six weeks down the line, somebody's become completely de-conditioned, you then send them home, they can't climb a flight of stairs, they've forgotten how to make a cup of tea. It's just not good practice, really. So, getting people ready pre-transplant is really, really important and Angie talked about doing a couple of tests before transplant. So, looking at somebody's cardiac function and looking at their respiratory function, so doing tests like echoes to see how well your heart's pumping and lung function to see how well your lungs work are all fine, these are all static tests. 
 
What we do here is something called a CPET test, so we put you on a bicycle and we make you cycle quite hard for a few minutes and we want to see, functionally, how well your body is working. And if it's not working well enough, we then get our physios, our OTs, our dieticians all involved pre-transplant and we come up with a little programme to put you through. It's like going to boot camp, I suppose, in a way, and it's really, really trying to get you fit and ready for the next step. And the next step of transplant, whether it be an auto or whether it's an allo, is a big step, it's different to having your chemotherapy. And I think it's a mindset as well as a physical thing. But it's also that physical step of, 'I've had chemo before and I know it's been quite tough’ but this next step is like going from Sunday league park football to Premier League football. It really is that step up. It's much more difficult, everything is just a little bit harder. And because it's a bit harder, it takes more out of you, which means it's longer to recover. So whatever we can do upfront to try and get you physically fit, mentally fit, psychologically fit so that you're coming into your transplant as well as you can be then coming through the transplant process is going to be easier for you because you know what's going to be happening and you're, like, 'Right I know I've got to plan and I'm going to do this and do that and do the other.' You come out the other side, we get physios and OTs involved again and we've got you a post plan to try and get you fit afterwards and you're going to recover a lot quicker. Hopefully go back to school if you're at that age, back to university, back to work, back to your family: the whole point of doing transplants is to get you back to where you were before as best as you can. 
 
There's always going to be some deficit, there's always going to be a difference because you've been through a cancer diagnosis, chemotherapy and a transplant. So you're always going to be a different person. We don't want you just to have this treatment and sit in your house for the rest of your days just staring at the wall, that's no good for you and it's certainly no good for your family. We want to get you fit, well and healthy, get you back doing things again. You know, going out and walking the dog, going into the hills, visiting family members, getting on a bicycle, doing whatever it is you used to do, do that again. And part of all of that is all the prehab, really, is getting you ready before you come in for your transplant. 

Anne: John, I heard you say, 'Oh, you may be in hospital for a month,' are we talking about an allogeneic transplant or is it that sort of timescale for both? 

John: It's similar for both, so around about three weeks is our average for an auto and around six weeks is our average for an allograft. And some people will be a bit quicker, some people will be a bit slower but they're pretty much our averages. 

Anne: I guess the physical recovery is after they've gone home, do they go home with a package of physio and exercise to-, 

John: Yes, so the physios come and see you while you're an inpatient, and will give you some exercises to do, and then we'll give you a plan for going home and, if people are struggling, then we'll get physios back in again and again and again to really try and work with people to get them going. I mean, as I say, that's what we want to do, is we want to get you going again. 

Anne: Yes, I mean, we often get asked from people, 'Can you give me an indication of how long it's likely to be before I can go back to work?' for example. So they can give an indication to their employers, do you have a sense of that or does it vary so enormously? 

John: It varies a lot, certainly for our allogeneic transplant patients. I say to them, 'If you give yourself a year from the day that you received your cells as your, kind of, window of you getting better.' 

So I say this to a lot of people when they first come out, so you’ve changed your job now. The day you get discharged, your full-time job is getting better, that's all I want you to do, I want you to get better. And to do that, you've got to eat the right things, drink the right things, take your tablets and do physical activities and mentally stimulate yourself in some way. Whether that's reading a book, watching Game of Thrones, it doesn't matter. It's the things that stimulate you. And all of that is your full-time job every single day, and that is tough to do. I don't know if anybody's listening to this who's ever, I don't know, broken a leg or broken an arm and you get given your physio exercises afterwards, you do them for two days, maybe three days and then you think, 'Oh, well, you know, it'll just get better over time, won't it?' And then, a year later, you've still got a limp because you didn't do anything about that ankle that you broke, so it is about rehab. It really is about doing it every single day, it's really boring. It's really, really boring doing a lot of rehab stuff but, if you do take your tablets, you drink your drinks, you eat your food and you do some exercise, it all comes together eventually, it really, really does. 

Anne: Can I ask you about side effects? 

John: Side effects, there are many. And a lot of these will be discussed in the pre-transplant conversation. So one of the risks post-transplant is cytomegalovirus, which is called CMV infection, and it affects the bloodstream and it occurs, usually, as a primary infection when we're children and you keep it forever as a latent virus and it reactivates later on in adults after transplants, when your immune system has become compromised. And similarly with allos, general infections, and that can be anything from an infection in your skin, an infection in your central line, in your Hickman line or in your PICC line in your arm, an ordinary cough or cold that the rest of your family, they have a bit of a cough or cold and a small temperature or a fever for 24 hours and they feel great. For you, immediately post your allogeneic transplant, that might put you in hospital and you might be really, really unwell with that. So infections are a real big risk for our transplant patients. 
 
The third thing that most people get very concerned about is something called graft-versus-host disease. It comes in two varieties, there's acute graft-versus-host disease and chronic graft-versus-host disease. And this only exists in patients who have had a transplant from somebody else. So it's the donor cells reacting with your cells in your own body, so the graft versus the host, and the two things are, sort of, fighting with each other. The fallout from this can manifest itself in an acute setting as a skin rash or as a liver disturbance or bowel disturbance, you end up with diarrhoea, you look as though you've got a really bad case of sunburn or you go bright yellow from your liver. And in the chronic setting, it affects pretty much every organ: eyes, mouth, skin, liver, and both of these can be big, big problems when they occur because people need high-dose steroids and they need alternative treatments to try and control it. 
 
So, for our allogeneic transplant patients, it can affect around about 40-60% of people after their transplant, so it's quite common. It happens in different grades, at different points post your transplant and affects different areas. So it's something we try and tell people about upfront, that you may get graft-versus-host disease, it's a very difficult and long set of conversations and it's often one, as we've said, we bring people back several times, so we try and talk to you about this several times, we talk through graft-versus-host disease. It's also in the booklets that people are given before transplant and also after transplant that describes GvHD. 

Anne: Is it far less likely to have side effects with the autologous or are they just different side effects? 

Angie: The actual inpatient transplant side effects tend to be your chemotherapy side effects, so a little bit of nausea sometimes, sore mouth, perhaps a little bit of diarrhoea because of the actions of the chemotherapy within the lining of the tummy. And, obviously, fatigue because we are battering the bone marrow so they will need blood and platelet transfusions during their inpatient stay. As John says, they will almost certainly need some form of antibiotics for an infection, both allogeneic and autologous transplants. So that's why they're usually in hospital for around about four weeks, to monitor for signs of infection, to be able to be given these transfusions and things. But side effects, longer term for autologous transplants, they tend to, sort of like, wear off a lot quicker because you haven't got the donor immune system that you've got to content with. And it's usually just fatigue and it's actually just building yourself up slowly again. Like John says, you know, your rehabilitation before and after is really important to get that strength back into those patients. But those tend to be the side effect for autologous patients. 

Anne: I've heard that, after a stem cell transplant, and I'm not sure whether it's both, that you need to have your childhood vaccines again, is that correct? 

John: Yes, for both, yes. Yes, you get all of your baby immunisations all over again because we essentially destroy them through the transplant process. And things like people are obviously very focused on COVID at the moment, so COVID vaccines are rendered inactive by the transplant process. So you have to start again, so even if you've been fully vaccinated before your transplant, we would need to revaccinate you again afterwards. And we tend to do that at three months after the transplants to allow the cells to have bedded in and your immune system to be up and working to a degree again so it can actually produce antibodies against the vaccine. 

Anne: Once treatment's been completed, how frequently are they invited to follow up at the hospital? 

Angie: So, from an autologous point of view, we'd usually see them, sort of like, a couple of times, perhaps a week after they were discharged, and then, depending on how they were, perhaps one or more times after that. But then we would refer them back to their referring centre but, for allogeneics, it's significantly different. 

John: We're a little bit more intense. So, upon discharge, I see people once a week every week for the first three months and, sometimes, people will come back two or three times per week on initial discharge. Certainly if their salts in their bloodstream aren't high enough and they need top-up drips, if they blood or platelet transfusions afterwards. Many people still need those for several weeks and even months after their transplants. So they're very closely monitored. 

Once you get to three months and we've been able to discontinue the immunosuppression, then visits can be less frequent and they'll slowly step down to fortnightly, monthly, and then every few months. And eventually, we let people out as far as one year between visits but all of our long-term late effects patients attend on an annual basis for review. 

Anne: Are there any late effects people should be aware of and that they should look out for? 

John: So there's quite a lot of late effects in the allogeneic transplant patient population. So if you've been exposed to total body irradiation and high-dose chemotherapy, with your eyes you can suffer with cataracts or early-onset glaucoma. You can have problems with your dentition, so your enamel on your teeth can be affected by both chemo and radiation. So it's really important that you get regular eye tests for your eyes to make sure your vision stays okay and, if there are any problems like early-onset cataracts, get those addressed. Similar with visiting a dentist at least every six months and making sure that your dentition's in good order. And, when your dentist sees you, they'll also inspect the inside of your mouth. Your dentist is looking for abnormalities that can be occurring there, and they can be more common after high doses of radiation and chemotherapy. So your dentist is looking out for any secondary oral cancers. 

Then, generally, for the whole skin, is secondary skin cancers, again because of the high exposure. Cardiac problems, respiratory problems, renal, liver, so it's the whole system that can be affected after transplant with late effects which is why we see people regularly on an annual basis because we're looking for these complications. What a lot of places will do, and your centre, if, you know, if you're a larger transplant centre, have an end-of-treatment summary. Well what they'll do is they'll list all of the chemotherapies and the radiation that you've had and that will give you, then, the specific side effects. So, if you haven't had high doses of radiation, you're less likely to get cataracts, for instances, as an early-onset. So that wouldn't be a risk factor for you. Your centre will look at your end-of-treatment summary and tell you the things that you're more at risk of. 
 
So it's keeping things under control, so you know, making sure your cholesterol is okay, making sure that your fluid intake is alright so you're looking after your kidneys, making sure your blood pressure is alright. So it's looking after yourself again, it's really about self-management for the long term. 

Anne: Yes, and is that relevant to all the people who've had an autologous stem cell transplant? 

Angie: They can still get complications but not usually as significant. So some of the patients that we see, you know, they may have some cardiac toxicity where, you know, the heart function is just not quite as normal and we're going for the worst-case scenario. Not every patient, thankfully, will have all these problems, because you'd think, 'Why on Earth am I doing this transplant?' But what I would say is just, you know, speak to either your referring centre if you're still under their care or speak to your GP. 

Anne: If someone has a stem cell transplant but their lymphoma comes back, are there other treatment options for them after that? 

Angie: There's differences in terms of when the patient’s disease comes back. So if it comes back quite quickly after transplant then that's often, sort of like, more of an indication that this is a challenging disease and will it actually be treated with standard chemotherapy, does it need some alternative type of immunomodulating drugs, that type of thing? 

There's often clinical trials that can be given and, again, we've got patients that have had an autologous transplant, that the disease has come back we're now treating it with an allogeneic transplant. So there's still sometimes other options and it would be, you know, obviously clinician-based but also possibly research trials you'd be looking at and what was available at the time. 

John: It's a little bit more difficult if you've already had your allogeneic stem cell transplant. And you mentioned immunomodulating therapies, there are a few of those after an allograft that may be appropriate for you, most of those usually within clinical trials. So your referring centre will be able to look into that for you if your disease has come back after your allograft. And that's particularly if it's within that first twelve months of transplantation. If it's many, many years down the line, and some people unfortunately do relapse several years later, then there is the option to do transplant again. It's more unusual, we haven't done that many second transplants, probably round about a dozen or so over time. But it is something that can be looked into if you're far enough away from your transplant and the disease has come back. 

Anne: So can I ask you, when someone's in hospital, can family members visit when somebody's having their stem cell transplant? 

Angie: Yes, of course. I mean, it'll depend on your transplant centre but, yes, we would allow patients' relatives to visit, as long as the relatives are well or the family and friends are well. We usually, sort of like, allow two visitors in a room at one time but, yes, it's definitely, definitely encouraged. Because, if you're in a room for four weeks on your own and all you're seeing is the odd nurse coming in and out every shift, it's really difficult to, sort of like, think about what's going on in the wider world really. So yes, we would certainly allow relatives to visit. 

Anne: Have you got anything to add, John? 

John: So we've been talking a lot about transplant, and transplantation for both auto and an allograft is complicated, there's no two ways around it, it's complicated. However, it doesn't have to be as complicated, maybe, as we make it sound. You know, at the end of the day, you've been through a lot of chemotherapy already, you've now got to the point where a decision needs to be made: are you eligible for an auto, are you eligible for an allo, and do you do either or neither? And that's the crux of this, you know, you've been through stuff and you're going to go through something else if you want to. And, as a team, whichever team you're under, whichever part of the country you're in, that team's there to support you. So I think that, although this all sounds a little bit bleak from some of the stuff we've been talking about today, I hope that, by the end of this, there's a little bit of positivity about it, is that there are options there for you, you just need to explore those options with your team and get yourself ready for what your next step is going to be. 
 
And if you, you decide, 'Actually, I don't want to do this yet, I'm going to put this off for a period of time,' put it off for a bit of time. You know, if you're able to do that, just say, 'Look, I can't make this decision now, I'm going to come back in two or three weeks' time and have another chat with you and we'll go through it all again.' And your team will do that. So I don't want this to have sounded as though we're all a little bit down and, you know, that all you can think of going away from this is the complications and the side effects. But, the flip side to that is 97% of people get through their auto and 80% of people get through their allo. So I don't want to be down, and I think that both Angie and I, we're pretty positive people I think, and I hope that comes across, that you know, this is difficult, this is serious, it's complicated. But there are teams, we're all here to support you as the patient to get through this as best as we all can together because we are in it together. 

Angie: I think some of the booklets and, you know, things that you'll read about transplantation and perhaps just even this podcast, you'll think about and think, 'Gosh, this is really scary.' And it is and you need to be informed but we've giving often the worst-case scenario with all these complications that can happen. Yes, it can happen to some patients but, equally, some patients get through it and think, 'Yay, what were you going on about?' But I'd rather people be saying, 'What was she going on about with all those side effects?' than actually not being informed and then coming through it and saying, 'Nobody told me about this.' 

John: I love it when people come back a year or so later and go, 'John, you told me all this horrible stuff and nothing's ever happened,' and I go, 'Well, good.' You know, if you're bored for the next six months, brilliant, bring it on, because it means that things are going really, really well. 

Anne: Thank you for that amazing insight into stem cell transplantation, that's brilliant. We do have a couple of ‘bonus questions’ that we'd like to put forward to our speakers. The first one is what motivates you to do your job? 

Angie: It's the patients, really, and it's actually about those good outcomes that we get. We see the patients, like John said, that are twenty, 30 years post-transplant. You know, the patients that we saw when we first came into this job together in 2001 that are still really, you know, doing really well, they've got their normal life back. You know, they've perhaps married and had children and things like that. And I think that's what's really motivating. It's sometimes our job is really difficult as well, because we obviously get the other side of that, but I think, yes, it's wanting to be able to do better for our patients. 

John: I enjoy doing this because hopefully I'm helping at least one person. And I think, you know, as we bumble our way along, if we help one person, each of us, then I think we've done a good thing. 

Anne: The other question I had was, if there was a message you could give to somebody with lymphoma, what would it be? 

Angie: I think probably try and remain as positive as possible, positive mental attitude really does help. You know, it gets you through a lot of your treatments, it's not going to be easy, the staff at your centres have seen this before. That's not to undermine your disease but it's to, sort of like, say, 'We've seen it, come and talk to us, we'll try and help you through your treatment journey as much as we can and make sure that you and your family are supported.' I would hope that that would be the case throughout any of the centres, really, that these patients are actually-, the patients are going to. 

John: All of these things are quite scary, they're quite frightening, and it's the first time you've ever been through it. And as Angie says, you know, we've seen thousands and thousands of people go through this. But it is your first time. Your very, very first time and you've probably never met anybody who's been through this either. So try and get information from every place you can get it from. Speak to other patients if that's available to you to see what happened to them and how they cope with it. Listen to the staff, you know, the nurses on the ward, the cleaners, some excellent advice from people who come in and give you your dinner. You know, what they think is the best food to eat on a Tuesday afternoon, they know what's on the menu all the time. So it's basically listening to people and taking advice. And you take a little bit of advice from everybody and you'll work your way through it. It's really just trying to absorb everything you can to make it easier for yourself, so the more you understand about what's going to happen, it makes it a darn sight easier for you to get through. 

Anne: Angie and John, thank you so much for sharing your experience with us, it's been fascinating. We really appreciate it. 

Angie: No problem, thank you. 

Explanation of some of the terms used in this podcast

• Apheresis - aprocedure in which something is separated out, usually out of the blood; a special piece of equipment separates out one particular part of the blood (for example plasma, the liquid part of the blood, or cells such as stem cells) and returns the rest of the blood to the body.
• CMV - cytomegalovirus, a virus that is more likely to cause infections in people whose immune system is weakened by lymphoma or a treatment for lymphoma.
• G-CSF - granulocyte colony-stimulating factor, a growth factor that stimulates the bone marrow to make more white blood cells.
• Haplo (or haploidentical) transplants – a type of allogeneic transplant using cells from a family member, who is half-matched to you (such as parents or children).
• Immunomodulators - drugs that alter the way your immune system responds to lymphoma cells, helping it work more effectively. They also act directly on lymphoma cells to stop the cells dividing, and activate processes that kill the cells.
• Umbilical cord donation – using blood within an umbilical cord, after the birth of a baby, to harvest stem cells.

For further information and support

Read more about autologous stem cell transplants.

Read more about allogeneic stem cell transplants.

If you would like to talk to someone about any of the information you have heard or read here, you may like to contact our helpline services.