So what made them decide that you needed treatment after those five years of watching and waiting?

The white blood cells go up, which make the red ones that, they crowd the red blood cells out, and you obviously need your red blood cells for oxygen and iron in your blood. And also it reduces your haemoglobin, which is your anaemia levels. And you also get very, very tired because your body isYou’ve got platelets, you’ve got white blood cells, red blood cells, and if you’ve got an imbalance then you’re going to get very, very tired, and the anaemia levels went down to quite a low level. And also the red blood cells were going down as well. So after about five years, and I was getting very tired, they decided that it was probably the right time.

It was a definite watch and wait for the first five years because they don’t want to give treatment unnecessarily, because if it’s done too soon it’s not going to be enough and you’d need it again in another eighteen months. And they also look at a very holistic approach. They don’t just look at the blood cells and numbers. it’s not just number crunching, it’s how the actual patient feels. And I was beginning by then to get very, very tired. So they thought that in 2005 that was the optimum, with all the blood readings and how I was feeling, that that was the best time to start.

Two years, three years ago I had chlorambucil and it didn’t work. After the six month’s course nothing happened, so I was told by the consultant that it was no longer any use to me and that I would have to start on another drug. The first thing I asked him again was, Am I going to lose my hair And he said, It will thin and that will probably be the only problem you hav. Do I have to come into hospital No, you can have it at home but you will have check-up I started the drug, FluCy, I was allowed four treatments. They gave me three. The first treatment worked. I had a white cell count of 350, and that was immediately brought down to 15 on the first dose of FluCy. That’s a three day course. No steroids except my ordinary five milligrams I have to take daily anyway. It didn’t affect my sugar levels. I did have a temperature. They told me I would have. I was taken into hospital because they were afraid that there could have been an infection, but by next morning I was fine and I came out. I continued the second dose of FluCy. Nothing happened. It didn’t bring it down any further. It didn’t take it up. The third dose didn’t work at all. My consultant then decided that since I was only allowed four doses he wanted to keep one dose back in case I really needed it at some other time.

So after about five years you started taking chemotherapy tablets. Do you remember what they were called? Doesn’t matter if you can’t.

Something, chlor, chlor
Chlorambucil?

Yes, thank you, chlorambucil.

And tell me a bit about how you had to take those and how many and how often and
I had to take seven tablets a day for eight days, which was quite a lot. And initially I was prescribed some sickness tablets, which are called mecan- [mm] I can’t think what they’re called. I’ve got them upstairs.

Doesn’t matter.

The first week after taking the sickness tablets I got a bad reaction and I got muscle reaction, so I was twitching, couldn’t breathe, which was very frightening because when I first started feeling that way I thought it was the chemotherapy, but it wasn’t, it was the sickness tablets. So the first week on my chemo was a bit traumatic because I got rushed into A and E to have whatever they, an antidote to the sickness tablets. That was a horrible experience but I was just unlucky. It was dealt with very quickly. So after that I decided not to take any sickness tablets. Then it felt a breeze after that the next week just taking my chemo. Did make me feel very sick, did make you feel, your head feel very woozy, was very unpleasant but I got through it without any sickness tablets. So I think I did quite well and I was quite lucky.

It was quite a lot of tablets to take in a day, so that was quite daunting. I took them all at once so there was no question about missing any or anything like that. And I don’t think I had to take anything else like anti-viral or anything with them, whereas my last lot of chemo I did; it was a slightly different one. So I had a week on the tablets then three weeks to sort of recover and then another back at hospital. And so every month I had to go back, have blood tests, quick chat to see how I felt, but they seemed to work quite quickly, the white blood cells started dropping but it took the six months for them to drop right down to what they were happy with, which was about seven, I think, and they’d been about 230, according to the, you know, small drop of blood that they take.

Tell me about this latest chemo, the fludarabine and cyclophosphamide. How many pills? How often?

Now that was, my husband did a flow chart on the wall because it was three days of three lots of fludarabine, three lots of cyclophosphamide. There were also anti-viral tablets to take. There were sickness tablets to take. And there were also, I can’t remember what they’re for, another sort to stop you getting pneumonia I think, which was co-trimoxazole. Can’t remember what that’s for but it’s something to do with infections.

So on day one took a sickness tablet about an hour and a half before the six chemo tablets. So we had to work it out so that, like that, so he did a fantastic chart on the wall, pen, tick it off. Sickness tablets, six chemo tablets plus an anti-viral, plus every Monday, Wednesday and Friday this other tablet which I think was to do with chest infections, oh and shingles, things like that, and herpes, that’s what those are for. So on top of that I was also taking my own anti-depressants and various things that I take. And then the rest of the week you just took the anti-virals and the sort of thing that was like an antibiotic. Then the next day was the same, and the next day was the same, so there’s three days where you take these multiple tablets. Oh, and I forgot, after the sickness tablet in

I started with a chemotherapy which I think was called CMD, and that was explained to me, it was a fairly mild type of chemotherapy compared to some of the more extreme examples, and that it would take seven months of repeated infusions. And the first dose was very uneventful and I think it took about an hour to infuse. I went as an out-patient, came home, felt perfectly okay, no nausea, no side effects of any sort as far as I was concerned, which I thought, Okay that’s fine, I can handle tha.

The second month came around and that also wasn’t too bad, but by the third and the fourth month, obviously the toxics were building up in your body, and at the fifth and sixth the side effects were pronounced, and the seventh were very pronounced. But after a day it had gone, just feeling sort of sea sick basically for a day or so. That gave me a remission which sadly only lasted about five or six months, and the key signs in that again were lymph nodes were not disappearing back to even slightly enlarged, they were enlarged. It was decided that I should have a break from treatment before we started anything else, and I then had about five or six months.

I presented myself shortly thereafter to hospital, and from the start I was greatly impressed by the orderly efficiency of the place and the kindness of all the staff. The hospital ran their own tests on me to confirm the diagnosis and to establish the extent of the lymphoma. Following a mild form of chemo, a regimen of pills, I was given a longish course of radiotherapy on my neck and shoulder. Happily this was considered successful and I was on remission for some time.

So after that you had a very long remission, about ten years, yes?

Yes, and it’s only this year, recently, that I’ve found that it’s recurring and that lymph nodes are increasing in size but at a rate which is commensurate with low grade.

So what were the symptoms of the recurrence, you could feel lymph nodes?

I could feel, well one of the places where they manifested themselves before, and again, was in the groin, which is the only place you can actually feel, the rest are internal. And they asked me again if I’d do a trial, and I was a little bit more careful about this one. They said that the Germans had got a theory that instead of having three weeks intensive radiotherapy at high doses, that two applications of a very low dose would do the same thing. And so I had one low dose, a blank day, back and another low dose, and we’re now waiting to see. But the first measurement, and the first sort of hands-on feel by the doctor reckoned that it was probably working, it seems to be smaller, which is good news because, you know, two low doses are infinitely preferable to three weeks turning up, I don’t know what the dose is they give you.

So it would be year or so later I started again with a chemotherapy called rituximab, which was at the time, going back five years or so, quite revolutionary. And that was explained to me that it was only four infusions given over a four week period, very minimal side effects and pretty good chances of a long lasting remission. The first dose that I had went, I had a very bad reaction, and it was explained to me that, after I’d recovered from the reaction, which was actually quite alarming – I had I think it’s called an anaphylactic shock – it was explained to me that basically some people can do that, I’d been the one person in the X thousand that it had happened to, and that they would then reconsider whether they should continue with the further treatment.

I think the hospital spoke to the drug manufacturers, got some further advice, and after a long discussion, you know, between my doctor and myself, we decided to try again. And I was very, very closely monitored, I actually was admitted as an in-patient, given some pre-treatment, instead of a four or five hour infusion it became a thirteen hour infusion, and I was, actually my blood pressure and temperature was checked every fifteen minutes throughout those hours and hours of infusion. And that seemed to be okay, so they actually were able to get that first infusion of the therapy in. After that they were okay, they were five or six hour drips and again gave pretty good results. I was declared clear, again, and that lasted for about another six or seven months before symptoms presented yet again, unfortunately.

All of this time I was working, I would take time off work having the chemotherapy, recovering from chemotherapy, but I managed to keep well. I didn’t lose my hair at any particular point, in any of those therapies. I was normally active apart from when recovering from the chemotherapy, and we started again with investigating how best to combat and to treat the illness. And at that point there was talk of a new drug called Zevalin, which at that point I think had been only used in a very small number of cases, and it was decided that maybe I was a suitable case for this. So I had to be assessed at a specialist hospital who had a nuclear medicine department that could investigate how successful it may be.

And so it was that in December, in fact sorry November 04, on my birthday, I actually went in for the first pre-treatment, which was actually some more of the treatment which had actually made me unwell beforehand, so one has to be treated first with the rituximab before you can actually have the Zevalin. And so I spent my birthday, my 57th birthday in hospital as an in-patient because again they wanted to make sure that if I had a bad reaction I was in the right place. I didn’t have a bad reaction, had the treatment, came home, had a not very pleasant reaction the next day, severe nausea, which passed off within twelve hours of it starting, thank goodness.

A week later I went for the second dose of Mabthera/rituximab, which was the day before the Zevalin infusion. And again I was an in-patient for this. The Zevalin was given on December 2nd 2004. it’s very undramatic despite its power. It was a ten minute infusion of a radio-labelled, radioactive isotope, basically, which then goes into my blood stream and attacks the tumour cells locally. That took ten minutes to infuse under very controlled conditions.

So they then said to me that, What we’re going to do is, after you’ve had this three months aggressive treatment, we are going to consider you for a stem cell transplan, and obviously they went into this in great detail, I’ve got all the leaflets and booklets from different associations, and went into it. And basically the idea of this is that they take your own stem cells out of your body, you go into, it’s called harvesting, where they take your blood out and it goes through like a dialysis machine and it separates your blood and it takes your stem cells out and separates it into its own bag. And they then can store this. This took two days and I was, it was four hours each day for two days, you know, so they get enough stem cells, I think they need a certain amount. They then was able to freeze the stem cells, but this was in the November of 2001, and they then geared me up to have the actual stem cell transplant in the January of 2002, so it was all going to happen really quickly. So I was like then gearing myself up to be admitted to hospital.

I then went into, the January came, I’d had the harvesting okay, things were going pretty well, I was quite well, I’d just had some, the treatment that I had previously had got rid of most of the lumps that I had, so the disease was minimal, but just to make sure of that I had to have a really aggressive regimen of treatment once I was in hospital for getting ready for the transplant. So that was quite aggressive treatment for a whole week where they just, you know, they’ve literally got to suppress your immune system, so you’re open to infections. I had that for a week and then on the seventh day they then gave me my stem cells back. And the reason for this is, their view is that once your body has been completely, you know, blasted with the chemotherapy, they give you your stem cells back and then it can start growing again, you need blood cells and that can start growing. So that was the theory and that’s what happened.

And so I was in hospital for about three weeks and then I came home, and I was on, I had to be really careful, you know, catching infection, because I was still, my immune system was still quite low and it was going to take a good six months for it to recover, so I was on all different drugs, you know, to help me fight off infections. And I did have spells where I had to, I was readmitted to hospital, which is normal after a procedure like that. And so as far as I know that this stem cells transplant would give me a good ten years in remission. So I came home and I went for checks and they said, Yes you’re in remissio, and, you know, it was, like, six months later then I started going back to work and I joined the gym again, and I was getting myself fit and healthy and I had a really good period of time where I felt really good, you know, that this has gone.

I mean I now am no use after three o’clock except for cooking a meal. All my social activities have stopped. I used to cook for the WI markets. Can’t do that anymore, haven’t got the energy for that. I used to help run the local WI branch. Certainly now I can’t do that because I’m too tired to go out in the evenings. I tend to have put on a bit of weight. I mean I know I’m a bit weighty but I have put on more weight because I haven’t got the energy to go out because I’m frightened if I go out I can’t come back. I used to do thirteen, fourteen mile yomps, and I don’t do those, I’m nowhere near.

In fact when I was suffering from the chest infection and also the lack of oestrogen, it was all I could do was to go round the shops in our local town on a Saturday morning to collect and do just the shopping in the supermarket. Once round the supermarket mid-week and once round the small small shopping area, I hadn’t got the energy. I was delighted to see that I could walk at a moderate pace instead of just plodding, recently. Because of the continual chest infections I’m so breathless that when I came, I’m doing a patchwork, City and Guilds patchwork, a guild thing, and I went back to the work room the other day, having popped down to the library to get some photocopying done, and the fellow student said, My God have you been running?’ And I said, No I’ve got bad lungs now.

So, enough, yes my health has deteriorated. My social life has deteriorated and, whereas I was renowned in the family for feeding the five thousand and I entertained people all day, I can’t do that now. I can give them either tea or I can give them a lunch but I can’t do the whole day. So the contact with the family is actually decreasing and I’m becoming more and more isolated.

My mother lives about an hour’s drive away and the roads are particularly appalling at the moment and it’s very hard driving in the ruts over to her town. And by the time I’ve got there I’m quite exhausted with the traffic conditions and the road conditions. She is not in very good health, being ninety-one, and I feel unable to do anything for her because I know I’ve got to drive myself back again. You could say my husband does some of the driving, but no, I am such a bad traveller and I can be travel sick anywhere. I have so little confidence in him. He’s had his cataracts done recently, so he does see better, but I’m still frightened of his driving because he is quite a lot older than me and his reflexes are a lot slower than mine. So I don’t like being driven. I really am travel sick.

So it’s only after years of having it I know the symptoms. Bruising, it has to be platelets; pounding in the head, it has to be the red cell count going down; and the fatigue, it means the white cells are going up as well. So I begin to know what’s happening to me. I know my body now.

So the symptoms have gradually developed over the years from what happened at the beginning.

Yes, the symptoms have changed in fourteen months. The platelets have never given me problems before. I’ve never had high platelets but I’ve always a hundred and five a hundred and fifteen. I noticed that it went down to seventy five. My local doctor looked at me and said, I think we’ll do a blood test, you’re bruisin, and I said, it’s platelets, isn’t it And he said he thinks so. He sent it off and it was confirmed it was platelets were low. This time platelets were even lower. they’re thirty eight, I’m bruising, still bruising badly, but they don’t usually do anything until it’s about ten. But I was told at the haematology clinic that now the FluCy has finished attacking the body the platelets will probably increase anyway and they will just watch it on the next blood test, which is in two weeks time. But if I feel ill or the bruising is all over my body I shall immediately go back, but I’ve been fine. So I shall have another blood test in two weeks and then I shall see the consultant.

Okay. So you mentioned tiredness as well. That’s one of the symptoms you get these days sometimes.

Yeah.

Can you describe the tiredness to me?

Because I’m very active, I will be dashing around and all of a sudden my body refuses to work. I can’t remember what I’m doing, my memory sort of gets, I can’t remember anything, and my muscles and all over my body just feels as though it’s like jelly, and I have to go and sit down. And if I sit down I can normally sleep for about two hours, which is unusual for me. When I wake up I’m fine but then I have to know my limitations, so when I’m getting to that stage I will spend a lot of time resting in the afternoon. I pace myself, do my jobs in the morning when I’m fit, in the afternoon I will sit and have a rest, then I’m fine. But it’s general your body won’t work and you get a fuzzy brain as well.

It came back to an extent that this year I’ve had to have treatment again, four months treatment, slightly different chemo, slightly worse. Psychologically it affected me quite a lot. But again, as we do, I got through it with the help of everybody. I’ve now had my fourth chemo. I’m hoping that my blood results will prove that the leukaemia has gone. I don’t feel as well as I’d hoped to feel, but I think there’s lot of other things going on there. I think it’s, like, two, three years further down the line than the last time I was in remission, so I’m obviously slightly older. And I think this particular chemo was a little bit stronger and it’s taking me a lot longer to recover.

I’m now hopefully looking forward to three to four years remission. I’m really looking forward to that because it’s beginning to tell on my husband and myself as to what this last four months has meant. it’s been a struggle for me and it’s been as bad a struggle I’d say for him, because being on the outside of someone, not being able to do anything physically to help them, is extremely hard. So I feel as if he’s gone through this with me really, which is, it’s fantastic to have someone by your side but you do feel very guilty about what you’re doing to them. So I think the next few months is going to be really uplifting and hopefully we’ll be able to get our life back on track and enjoy my daughter and my grandson.

Okay, you said you’re doing watch and wait seven years on, how often do you have to go and see your consultant?

it’s usually, these days it’s usually six months, if I have a bit of a wobbly, like I’ve got a lymph node which has been growing in my neck, it’s growing very slowly, my consultant is not at all worried about it, he tells me that he knows people without lymphatic cancer who’ve got bigger lymph nodes than I have. But naturally enough, you know, when you have lymphatic cancer and your lymph nodes do start to enlarge you get worried. So periodically he’ll say, Well come and see me in four month, you know, but normally six months. And as he usually says to me, he says, You’ll know before I do because you’ll start getting, you know, the night sweats or the weight loss or whateve. But I mean, yes, I do get hot at night and, yes, I do lose weight occasionally, and I go and tell him and he says, No you’re fin. And then also I have blood tests at the same time and he always says, If there’s a problem I’ll let you kno. But it is a question of trust I think, I trust his judgement and he has never been wrong. And I don’t trust my judgement because I often am, because I sort of think, you know, Yes I think it’s coming bac, but it’s not, soBut normally between four and six months, usually six months unless there’s a problem, or I think, I perceive there’s a problem.

So you still haven’t had any real serious night sweats or anything?

No, no I’ve had no symptoms, no, as I say, apart from this one lymph node which is growing slowly but steadily, just to remind me it’s still there.

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 they’re 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 that it is rich with stem cells and, you know, 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 than the results were quite good as well. They said to me that a bone marrow transplant wasn’t an option with me because I’d had quite a lot of treatment they didn’t feel that my body would be up to having an unrelated donor. I’ve got a brother that they tested but unfortunately he wasn’t a full match, so once they go with a brother or sister, if they’re not a match then the next step is an unrelated donor. And at that time I wasn’t in a, you know, they felt I wasn’t in a position for me to survive a bone marrow transplant using an unrelated donor, so that wasn’t really an option. And that was a year ago.

But now because I’ve, 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 I’ve 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 is that using your own bone marrow?

No this is actually using, this is using a baby’s umbilical cord’s blood that they get.

I’ve not heard of that at all.

No it’s a new procedure that’s, and in fact I think for my type of cancer I’m probably going to be the third person in the UK to have it.

Really?

Yes.

Gosh.

So it’s that new.

Well I might have to come back and see you again.

Yes, so it has got risks, obviously, you know, my consultant was saying that it’s fairly new and, you know, 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 get all the, catch all the infections and all the procedures that go along with having a transplant, like my body could reject it, and so I’ve 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 haven’t made up my mind yet, you know, I’ve got, I’m going back to see him in a couple of weeks and hopefully by then he’ll 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, you know, they find that because the, in one cord it’s quite rich with stem cells, and the only thing with usin

And now we’re a year plus, a year, thirteen months on since that diagnosis. I’ve had two checks since then, I’m still in remission. My blood count is normal and my bone marrow is normal. The tumours have gone, my spleen has gone back to its normal size, because that had also enlarged quite substantially. And I feel perfectly well, I’m working full-time, I travel a lot, I have normal energy for a man of my age. I used to go to a gym two or three times a week, I don’t have the time to do that now because I’m working, but I can still walk, swim, run, do things which I’ve always done in the past, and I feel very well. So I think that’s my story at this point.

Brilliant. So you just had the one dose of the Zevalin, is that right?

Yes, yes.

And presumably it’s kind of long acting?

Well I think because it’s so new, the experience of the U.S., where it was developed, has been that people do get very long remissions. I don’t know what the situation is in the U.K., because I guess they haven’t had that number of people that long to actually monitor it. But the expectation is that this is a fairly long acting remission. I feel, as I said, really well. In fact my wife said to me that I’m probably fitter and look younger than I did pre-diagnosis, which is seven or eight years ago, because I think the stress and the illness, it’s a strange thing to say, I think the illness has left me.

And so that’s how it’s been. Well, initially interferon, and since then my drugs have changed. In 2000 I was lucky enough to be part of the Glivec trial, or the imatinib trial, as it was known at the time. I was one of the first or second, one of the sort of initial group of patients who were on trial, and luckily it worked very well for me and since then I’ve been on Glivec. And yes, I’m doing fine, so things are, I think, nicely balanced out at this stage. Yes, so it’s not been a very difficult ride, you know, it has had some impact on work and on family but overall I would say I’ve been lucky with the way things have turned out for me.

So you’ve been on it for what, eight years or something?

Eight years, yes.

So is the plan that you stay on it indefinitely or what’s going to happen?

I think that’s the plan, yes, unless they discover, as part of this research, that there are huge things that are, you know, huge side effects to Glivec which are not great. I think the plan is to sort of keep going for as long as it, for as long as it takes really. it’s working okay for me and I think what the doctors say is that the longer the period of time that the illness has actually been on a lower sort of a depressed level, and the counts have been very low for a large number of years, that the further the, I mean the less the chances are of it actually, you know, climbing up again. So if that’s the caseI know I’m speaking like a complete novice here but, you know, that’s the way I see it. So as long as that’s the case then it’s fine, I’m quite happy to go along with it.