Interview 132

Age at interview: 58

Age at diagnosis: 51

Brief Outline: Non-Hodgkin's lymphoma diagnosed in 1998 after shoulder pain and finding a lump. Two years of watchful waiting then three bouts of drug treatment, with short remissions in between. Now in longer remission after receiving radiolabelled monoclonal antibody.

Background: Marketing Manager, married with two adult children. Ethnic Background: White British.

More about me...

He developed a shoulder pain which he assumed was due to playing sports. His GP prescribed anti-inflammatory drugs, which had no effect. He returned to the GP and got stronger drugs which still didn't work. Then one day when drying himself after swimming he noticed a large lump above his collar bone so he returned to his GP who referred him to hospital for a biopsy. He was unconcerned about what it might be so was very shocked when told the results showed he had non-Hodgkin's lymphoma. Two weeks later he saw a haematologist who explained what it meant and arranged for tests to stage the cancer, then recommended a period of 'watchful waiting' during which he would attend for regular check-ups but no treatment.

 

After two years several of his lymph nodes had enlarged so it was decided that he should start on a mild chemotherapy called CMD. Six sessions of this put him into remission but it only lasted 5-6 months. A further 6 month break was recommended to give his body a chance to recover before having more treatment. He was then given four doses of rituximab. He had an allergic reaction to the first dose so was very carefully monitored for the other three. He went into remission but again it only lasted 6-7 months so he was then given six months of COP chemotherapy, which in turn put him in remission for a few months. It was then decided to try a radiolabelled monoclonal antibody treatment called Zevalin, preceded by two doses of rituximab. A year after treatment he is still in remission, feels that his illness has left him and has returned his life to what it was before his illness.

 

 

He was given intravenous CMD chemotherapy over 7 months for his low grade non-Hodgkin’s lymphoma;...

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 that”. 

 

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. 

 

He had 4 infusions of rituximab followed by a few months remission from his low grade non-Hodgkin...

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. 

 

It is a year since he had Zevalin for his low grade non-Hodgkin’s lymphoma; tests show everything...

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.