Luke - Interview 15

Age at interview: 64

Age at diagnosis: 59

Brief Outline: Luke was diagnosed with hairy cell leukaemia after feeling very tired. A six week course of intravenous pentostatin as an outpatient put him into remission. Five years on he still gets tired and has other health problems.

Background: Luke is a retired journalist with four children.

More about me...

After recovering from surgery to treat peripheral vascular disease in his legs he started feeling very tired. His GP did some blood tests, repeated them and referred him to a consultant, saying he had a kind of leukaemia. At the hospital the consultant told him it was a rare but eminently treatable type of leukaemia called ‘hairy cell’.

 

He was treated with a chemotherapy drug called pentostatin. He was given the drug intravenously once a week for six weeks, which gave him no side effects and put him into remission. Following treatment he developed a condition called polycythaemia in which the red blood cells are too numerous and had to have some removed.

 

He continues to see his consultant every year for blood tests. He still gets periods of intense tiredness but the tests show his leukaemia has not returned. Since his leukaemia he has experienced other health problems including a type of skin cancer called melanoma.

Although Luke had been interested to read about other people's experiences of leukaemia he wouldn't want to join a support group, preferring to cope with his illness in his own way.

Have you been in touch with any support organisations or support groups for your leukaemia?

 

No, not in the sense of belonging. I mean I’ve looked on websites and read other people’s experiences. In fact I find that very useful actually because obviously then you realise you’re not alone. And then it’s also interesting to see how they coped with something that might be worrying you. And the other thing I did do was put my own experiences out on a particular website simply to sort of counterbalance all the bad, you know, not horror stories but the bad stories, and show that you can come through it fairly easily, as I did.

 

Are you the sort of person that would join a support group if there was one in your local town?

 

No, I’d rather do it myself.

 

Why is that?

 

Just personality, you know, I’m responsible for my own life and just, I don’t. I also don’t, I mean going back to the alcohol thing, I tried AA a couple of times, it just absolutely didn’t suit me and was horrible hearing other people’s experiences and just realising what dreadful things do go on. But I never felt it actually aided me, I just always feel that if there’s something that needs solving I’ve got to do it and, just my approach.

Luke's hairy cell leukaemia was treated with a chemotherapy drug called pentostatin; he had no side effects, which made him wonder whether he had really had the drug.

So what side effects did your treatment give you?

 

None. I’m quite, amazingly, I have to say I noticed none at all. I mean you were warned you might have nausea or whatever but I never experienced that, which is why to me I see it as a miracle drug, in my case, I can’t say obviously for everybody. But it really was, I simply couldn’t believe it. You know, I started to ask, ‘Well, did I really have it?’ But obviously I did.

 

So you didn’t lose your hair or anything like that?

 

No no, no impact on anything. Quite extraordinary. Because, yes you’re right, I mean when people say you’re going to have chemotherapy, one of the first things you think is you’re going to lose your hair, and my mine’s quite thick and long and it gets very long. I mean I wasn’t looking forward to that but… Mind you that, actually that’s a point, I don’t think I was ever told that I wouldn’t or mightn’t. Whether this particular drug is one that doesn’t do it, but if that’s the case I think I should have been told, but I wasn’t. But anyway it didn’t happen and, no, life just carried on and gradually I felt better and better.

After achieving remission from his hairy cell leukaemia Luke developed polycythaemia, an excess of red blood cells, and had to have some blood removed.

There was sort of two knock-ons. Curiously, as soon as my leukaemia seemed to have been cured I then developed polycythaemia, which is the red cells started going out of control, so I was having to have, not blood transfusions, but blood taken out, which was rather painful, not very pleasant for a while. But anyway that settled down.

 

Is there any relationship between polycythaemia and leukaemia, do you know?

 

Well, it’s unusual to have them. From what the consultant was wondering was whether it was because one had sort of got rid of the rogue white cells that somehow it had allowed the red ones or something - I mean I’m no expert so I don’t really know - to sort of take over a bit. But I know that since when I’ve mentioned it to other consultants they’ve said, “Oh that’s interesting. You don’t often get these two together.” But I don’t know much about it, apart from that...

 

It’s a new one on me.

 

Yes, it’s also a rather sort of mediaeval practice to cure it. You just drain blood out of the patient, but there we are, that seems to be the way.

 

But it works?

 

Oh yes yes, it worked, yes. Just thins the blood I suppose.

Luke's hairy cell leukaemia needed only 6 infusions of chemotherapy over 6 weeks - he was surprised how easily it had been cured.

And the hairy cell really it’s the white cells become hairy there, it’s sort of a funny shape and spread too much, so the only thing is to try and kill those off and get back to normal. But, as I say, after six weeks he did a final check and said, ‘That’s it. No need to come back.’ Took me totally by surprise but he said, ‘Yes it is amazing, as a drug it really is good.’

 

That was basically it. I mean I’ve had lots of other problems but this one certainly surprised me how easily it was cured. And nowadays I try, if anyone mentions it, I always try and say, ‘Well’, if they’ve got something much worse, I’ll say, ‘Well, you never know’, just give them an idea of what my case was so that it’s not all negative and gloom and doom.

Before being diagnosed with hairy cell leukaemia Luke felt too tired to do all his usual post-retirement activities, but his treatment only lasted a few weeks, after which he felt better.

How has having leukaemia affected your work? Were you still working when you had it?

 

‘92, 50, no, I think I’d just finished, I had to retire because of ill health anyway. No, I had just retired so it didn’t. The tiredness side, of course, meant that while I was doing other things, because when I retired I knew that I couldn’t just retire, I had to do other things, and one was, not actually work again, but do other things that I’d never done before, so I was doing courses and joining things, so the leukaemia did affect that because I didn’t feel up to doing it. But, as I said, the whole thing was over within a matter of weeks, so it’s just remarkable really how little impact in the end it had.