Interview 16

Non-Hodgkin’s lymphoma diagnosed in 1997 after finding a lump in his neck. ‘Watch and wait’ policy adopted. Later treated with various chemotherapies, a stem cell transplant, and a radiolabelled monoclonal antibody. Now offered a cord blood transplant.

He presented a lump in his neck to his GP, who also detected lumps in his groin. He was referred to a haematologist who biopsied one of the lumps. This showed that he had follicular non-Hodgkin’s lymphoma, which he was told was uncommon in his age group, and the consultant sought a second opinion. The diagnosis was confirmed and a policy of ‘watch and wait’ adopted rather than starting treatment. He was unsettled by being told he had cancer but that he didn’t need treatment. So for four years he just had a consultation every few months.

After four years the lumps in his neck and groin had grown and were causing discomfort so his consultant decided to give him oral chemotherapy monthly (CMD). During this treatment he was informed that his test results had been reviewed by another specialist who thought his disease had progressed further than originally thought. So he was put on more aggressive intravenous chemotherapy three weekly for three months (CHOP) followed by high dose chemotherapy (BEAM) and a stem cell transplant. This put him into remission.

Eighteen months later he noticed the lumps were regrowing so he was put on chemotherapy again (FMD and rituximab), which didn’t seem to work. He was then put on rituximab alone, which worked for a while, and then a radiolabelled monoclonal antibody (Zevalin) that also seemed to work, since which time he has been well, although the lumps are regrowing again.

He has recently been offered a cord blood transplant, which involves transplanting matching stem cells from the umbilical cord of a newborn baby. The risks are high and he has a difficult decision to make.

Had reflexology from a volunteer during treatment, which was relaxing and helped him to sleep; he…

Age at interview 44

Gender Male

Age at diagnosis 33

Oh yes, you mentioned complementary therapies earlier, you said you used reflexology?

Reflexology, yes.

Was that just for the relaxation effect or did you believe that it might help cure your illness?

It was, no, it was, when I was having treatment, when I was in the middle of treatment once in my local hospital they had someone come round offering, they had a reflexologist that came round and offered, did anyone want their feet doing while he was there? So I said yes. And so he done that and I found that while I was sitting there and I had the treatment going through me, it makes you feel quite tired anyway, but I just found that I just felt that it was quite relaxing while I was sitting there having treatment. So I said to him, ‘Would I be able to have this on a permanent basis?’ And he said, ‘Well because you’re having treatment,’ which is quite, and I didn’t know this but most authorities do it, theres therapists give up their time and they tend to voluntarily do reflexology or massaging in their own time. And this person, that’s what he did on a Tuesday, he helped out at the unit where they give the chemotherapy.

So I had a couple of sessions with him and I didn’t, he said to me, ‘It’s not going to help you, this is not going to help your illness, it’s not going to do anything at all, it’s just going to relax you’, because when you’re on certain chemotherapies and that you can’t sleep at night, you know you, with the mixture of drugs that you’re on, I was on so many drugs that I found that I couldn’t sleep at night, I was getting up early hours of the morning, coming downstairs, watching a bit of telly, going back up to bed again. So it got to the stage where I needed to do, find some form of relaxation. And so I went to a couple of sessions of this and I found it quite good. But I also think that if people can get tapes and CDs they’re quite helpful as well, and that’s another thing that I did. At night when I went to bed, I used to listen to relaxation tapes and CDs, which are really helpful.

So then I stopped going because I was going through quite a good period so I felt that I didn’t need that then. But I’ve recently just started having reflexology again, and even though I feel quite well it’s really beneficial, it really relaxes you and you can have a really good night’s sleep. So I feel it’s, anyone going to a reflexologist or an aromatherapist, and they’re pretty good, they know, you’ve got to tell them that you’re having treatment and what sort of cancer you’ve got, and they’re quite good, they know what areas to stay away from. And with me the reflexologist I’ve got now she knows what areas to, not to work on, you know, in the lymphatic system. So but other than that it’s really good.

Have you used any other types of complementary therapies at all?

No I haven’t, no I’ve only had reflexology. They’re quite, I had a couple of sessions of aromatherapy massage where they do the shoulders and your back and that was quite good. But I tend to mainly stick with reflexology because, you know, they can do all your, all the parts of your body, they can work on all different parts of your body just through the feet, so I tend to stick with that one.

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Has been offered an experimental cord blood transplant, which might gain him a long remission,…

Age at interview 44

Gender Male

Age at diagnosis 33

My next procedure is going to be a cord blood transplant.

A cord?

Cord blood transplant, yes, which is

What does that mean?

This is the latest thing that’s come from America, and it’s basically, what theyre finding is that they treated a lot of children that have got leukaemias and cancers, using this method, and basically they take the blood out of a newborn baby’s umbilical cord and they find in that is rich with stem cells, which is good for fighting off the cancers. So they use that as a transplant now instead of bone marrow. And they tried it on adults and they found that the results were quite good as well. They said to me that a bone marrow transplant wasnt an option with me because Id had quite a lot of treatment they didnt feel that my body would be up to having an unrelated donor. Ive got a brother that they tested but unfortunately he wasnt a full match, so once they go with a brother or sister, if theyre not a match then the next step is an unrelated donor. And at that time I wasnt in a, you know, they felt I wasnt in a position for me to survive a bone marrow transplant using an unrelated donor, so that wasnt really an option. And that was a year ago.

But now because Ive, you know, a combination of the rituximab and the Zevalin has seemed to work quite well, I’m quite healthy at the moment and they feel I’m in a good position to have this cord blood transplant. So Ive just recently been to see my consultant and I’m going back in a couple of weeks to get a date that I’m going into hospital to have this transplant, which I believe is probably Easter.

So it has got risks obviously, my consultant was saying that it’s fairly new and he gave me all the procedures and he had to give me all the information that could go wrong. And I’m going to be quite ill for quite a while when I come out of hospital, probably going to be in there for about six weeks in isolation and I can just, you know, I’m probably going to catch all the infections, and all the procedures that go along with having a transplant, like my body could reject it, and so Ive got a long, I think after this it’s going to be quite a long journey this year with me being ill again after being quite well at the moment. So I havent made up my mind yet, Ive got, I’m going back to see him in a couple of weeks and hopefully by then hell have checked just to make sure that the cord is a perfect match for me, which it is at the moment.

So they still have to match it?

Yes it’s still got to be a match, but it’s not as critical as a bone marrow, they find that because in one cord it’s quite rich with stem cells, and the only thing with using a baby’s blood cord, you know, blood from a cord from the baby, is that when you put it into an adult it’s going to be very slow growing, so my white count is going to take quite a while for it to come up to like a safe level for protection against infections, and so that’s why Ive got to be really careful. And he said to me that I’m probably going to have readmissions into hospital, I’m probably going to get infec, I’m going to need blood transfusions and platelet transfusions, and so Ive got a long journey after March, April time for the rest of the year.

And how great are the risks, did he tell you?

Ive probably got one-in-four chance of surviving.

Is that all?

Yes.

Oh my God!

Yes. So I’ve had to take that on board and, you know, because I’ve had quite a lot of treatment in the past, hes not saying it’s a cure but hes saying it could keep it away for quite a number of years. And I just feel that I would say to anyone that you’ve got to have confidence in your consultant, if they feel that theres a treatment that could possibly work I think you’ve got to go with that, and I’m being positive, you’ve got to be positive all the way through, and yes it’s a risk, one-in-four chance of surviving it is a risk but, you know, I’ve got to, I feel now that I’ve got to go ahead with it and I feel that that’s where I want to go.

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When his sick pay stopped he received Incapacity Benefit and Disability Living Allowance at the…

Age at interview 44

Gender Male

Age at diagnosis 33

What about financially though, have you continued to be paid?

Obviously being off that time now, the money that obviously my salary has stopped now so I’m just getting now like Disability Living Allowance. The reason, how it came about is, I’m actually classed as having a terminal illness because obviously theres not a cure for it and a couple of times Ive, well when it came back the second time it was quite, I don’t think they was, they was saying there wasnt a lot more they could do for me so possibly didnt have long. So I then was able to get the higher rate Disability Living Allowance and the mobility part. And then obviously once my wages stopped, once my company stopped paying me I then would be able to qualify for Incapacity Benefit. So that’s basically what I’m getting now, the higher rate Disability Living Allowance and all the components that go with it, the care side, the mobility side and the Incapacity Benefit.

How did you find out about those benefits?

Just basically through word of mouth really. You see no one really came forward with all this, we didnt really know what we was entitled to, but obviously the personnel department then put me onto Incapacity Benefit and I think my local hospital, in the treatment room they then put me onto, you know, and also my cancer counsellor she sorted all that out for me as well, she was really good, so she put me onto like the Disability Living Allowance and got me the higher rate. So yeah there was people there to help.

Good and so youve been claiming all these benefits, is it enough?

Well obviously my wife gets, with the two children she obviously gets the Child Tax Credits and shes working full-time so with that and my benefit money that I’m getting yes, were OK at the moment. And were also getting help with, because I work for the, am I allowed to say the insurance company?

don’t give its name.

Right, I work for an insurance company and because Ive been there for quite a number of years there was an insurance charity that came out to see me and they offered to help us financially as well. So I’m also getting help with them, so theyre giving us quite a substantial amount a month as well, so were getting help, so yeah were OK with that.

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At his third relapse a man became depressed because he felt his doctors no longer knew how to…

Age at interview 44

Gender Male

Age at diagnosis 33

They obviously felt that because it came back so quickly the second time, the treatment I was having, anything that I was having wasn’t working, I seemed to have a body that was fighting everything that they was giving me, and I think it sort of shocked them in a way that they didn’t really know what to do then. Because I’d had all the mainline treatment that was going, all the aggressive treatment, the stem cell transplant using my own stem cells, and the only other option open to me then was a bone marrow transplant using a donor. Because their policy is that they don’t normally use the same treatment twice so, you know, they was trying to think of ways, what was the options open to me.

So it got to the point where I was getting a little bit anxious because I could see that the consultants didn’t really know what to do at that stage, they didn’t really know what avenue to go down, you know, treatment-wise. So I suppose it, I was getting a little bit, I got a little bit down and things started going a bit, you know, I sort of went off the rails a little bit, I was getting frustrated and I was getting depressed because I thought I’d beaten it and then it came back again, and I suppose I was feeling that the consultant, I could see the consultants, you know, when they get a little bit, when they started getting confused as to what to give you as treatment, I think it rubs off on, as a patient, you know, it rubs off, you sort of come away thinking, ‘Well they don’t know what to do with me now, what’s going to happen?’

So at that particular time I needed to speak to someone and my local authority got me in touch with a counsellor, which I started seeing, who was an expert in cancers. So I then started seeing her and that was great, just what I needed at that time. And she said, ‘Look, don’t worry, theres loads of things out there and they’re just obviously, they’re just like waiting to see what could be available. And I just remember them saying to me that it was quite unusual for someone to relapse so quickly after having a stem cell transplant, you know, especially in someone my age, they don’t normally see it.

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Had been geared up to have treatment so was shocked to be told he would be put on watch and wait…

Age at interview 44

Gender Male

Age at diagnosis 33

I think the worst part is, the worst part that I remember really well was the watching and waiting policy because they’d gone from gearing me up to having treatment, which I accepted, and they went through everything that they was going to do, and then all of a sudden they stopped and said, ‘No actually were going to watch and wait you now because we feel that we don’t want to rush in with chemotherapy because it might,’ how they put it was, ‘If we rush into giving you chemotherapy now, when you’re quite well, it might limit the amount that you can have later on when it does come back or when it grows more aggressive. So that’s how they portrayed it’ ‘That we feel it’s in your interest just to watch and wait and well just keep an eye on you.

So I sort of come away, my wife and I come away from that interview and I just remember just being in shock really because they, I was geared up to having some form of treatment and then to come away and like they was going to leave me, you know, just didn’t seem right. So that was ’97 and so it was just a question then of going backwards and forward to my local hospital, having scans and bone marrow biopsies and just basically going back to see my consultant every few months.

This went on till 2001 where the lumps that I had in my groin, I had some under my neck, they were sort of getting quite big and a bit uncomfortable, and it was that stage when they decided that they were going to start treatment.

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Was concerned during watch and wait that his lumps were growing bigger and with hindsight feels…

Age at interview 44

Gender Male

Age at diagnosis 33

And that’s when, between ’97 and 2001 when I started treatment, in that period was very difficult, it was difficult with my family, sometimes I couldn’t cope, you know, it was quite stressful because I knew that the lumps were getting bigger, I knew that even though I wasn’t getting, it wasn’t painful or I didn’t have any symptoms of being sick or like the night sweats that sometimes you get associated with this, I wasn’t getting any of that, it was just the lumps that were getting bigger in my groin, and I had some under my chin and under my arms and the ones in my neck, and I just remember saying to my wife, ‘I think they’re making a mistake, are they, I’m sure they should be treating me now because it’s getting to the stage where they’re getting quite big. But every time we went back they said, ‘No were not rushing into, you’re fine were not rushing into treatment. So that was quite a hard time between the few years that I had to wait, that was quite a hard time.

Looking back on it now with all the experience that came afterwards, do you still think that was the right decision?

Theres sometimes where I still stick by my feelings that they left me too long because this was, this became apparent, I feel, when they, when I started treatment in 2001 and they put me on the CMD drug for three months, they also, they just, and then all of a sudden it came from another haematologist, consultant, who said, ‘No actually we feel hes gone further down the line than you said he had,’ so I felt there was this conflict in opinions between the two teams. And then all of a sudden like I was rushed off to meet another team of consultants who then put me on a more aggressive treatment, so I felt’ did the first lot of consultants maybe get it wrong and leave me too long when they could have treated me earlier?

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Had to be treated with Zevalin in a different hospital; explains how it was given, how he felt…

Age at interview 44

Gender Male

Age at diagnosis 33

And then I think it was 2005 they called me in and they said that, ‘Theres this new treatment that’s become available that we think you’re suited for. And basically it’s for people that have had all different types of treatment that have failed in the past and so I was an ideal candidate.

So this treatment came available and I went to another local hospital, I went to another hospital to have this treatment and it seemed to work. And since then, since July 2005 I’ve been quite well.

How did you feel about having a radioactive drug put into you?

I was, obviously I asked the question that, ‘Am I going to be safe walking, you know, having a radioactive drug going around my body?’ And it was quite funny really the only thing they said was, ‘When you go to the toilet make sure you don’t splash anywhere, and wash your hands properly. I don’t know what that meant like thinking am I going to burn things or something, you know? But it wasn’t like that at all. But no it was fine. And I didn’t have any symptoms at all, it didn’t make me feel sick, I didn’t have nausea at all with it. Oh sorry no I did, I did have a little bit straight after I had the Zevalin, the first few days when I came home I was, I did feel quite sick after that but that soon passed.

Were you actually sick?

No just really nauseous but I was on really good tablets, they were good tablets that you can get that stops nausea.

So how do they administer this Zevalin stuff?

It’s in a syringe and it takes fifteen minutes to give, and it’s just like a, just a syringe full, and that’s it.

Right, and how many doses of that did you have?

That’s just the one dose, just one dose.

Oh really.

Yeah what I had to have was, the week before, I had a course of rituximab and then the day of the Zevalin in the morning I had another course of rituximab and then in the afternoon I had Zevalin straight on top, and they find that the combination of the two works really well. And that was in July and we are now in January and I’m doing really well.

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