Interview 118

Age at interview: 44

Age at diagnosis: 33

Brief Outline: 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.

Background: Client Services Assistant, married but separated shortly after interview, two children aged 11 and 15. Ethnic Background: White British.

More about me...

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.
 

After having chemotherapy he had his stem cells harvested in preparation for a stem cell...

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 transplant”, 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 remission”, 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. 

 

His low grade non-Hodgkin’s lymphoma is in remission after lots of different types of treatment;...

 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