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. 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.

Can you tell me a bit more about the Glivec – how that’s administered and how often you have it?

Yes.

When you were having it originally and whether it’s different now.

Yeah. When I first started. Glivec is in tablet form and when I was first taking it, it was four tablets, which made up four hundred milligrams. And now I take a single400 milligram tablet. And that’s taken once a day in the evening after my evening meal. And that’s just all you need to do really.

Right. So every day of your life.

Yes, every day. Yeah.

And how do you feel about having to do that?

I don’t actually think it’s too onerous really, it’s kind of just something that’s so automatic to me now. And I think compared to having to inject yourself and what have you. I mean I guess it’s all relative, I suppose if I’d started taking tablets every day then I would have thought this is more of a pain really because I’ve got to remember to take it. But it’s such an easy option for me compared to what I started on that it doesn’t actually bother me. It doesn’t bother me and I just don’t forget it. it’s just second nature.

I think so many people take medication for different things, bits and pieces they have to do everyday anyway, that it really doesn’t bother me at all. No, I don’t find that a problem.

So what is the likelihood of it coming back?

it’s very difficult to say because not enough is known about the drug that I’m taking. I think that there is always a real possibility that the drugs that I’m taking will stop working, that you will develop an intolerance and then the drugs will stop being effective. And that’s something that I have to keep in mind because, as I said, it’s such a young treatment. it’s been around under ten years.

So the follow up on it is not massive and that’s something I do have to keep in mind. But what I try to keep in mind is whilst there is the possibility that this is not a forever drug there is also a very good possibility that it is a forever drug. And it used to be something that I worried about a lot but now I’m happy to be among the group of people that are proving that this will work or it won’t work. I mean whilst it doesn’t work for different people, for those it does work for there is that possibility that it could be a lifetime’s control. But I mean I do try and keep that in mind that there might come a day when I have to seek other options.

And then they found a, I think it was a type of rituximab, I think it is, and they use that, and they were able, I don’t understand the science behind it, but apparently it can sometimes work to solve the problem [of haemolysis]. And gradually my counts, my red cell counts, having gone as low as 4 – and the normal is 12, 13 – started to increase slowly. But I was, as I said, I was three weeks in hospital and when I came out it took another couple of months really before I was in any respects better and able to cope. So I was in bed and at home quite a bit.

And then they tried me on something called, I carried on with the rituximab after I came out and that certainly helped. And then they tried something called Campath, their plan was that they would try and get a grip on the disease, try and flatten it as much as they could, suppress it as much as they could and then go for an autologous transplant, which is basically where they take the cells, my own cells and then put them back into me at a later date. And apparently this can work, stem cells.

That was the plan and as the first stage in that they gave me this Campath and it had a miraculous effect on my counts. It brought them right down to, you know, the white cell count very low, right down to the low end of normal. And it sort of stayed there and I thought this was absolutely terrific. And so we were now, this was in November 2005. They weren’t able to give me all the Campath treatment because there’s a reaction that you sometimes get, and I got the reaction and they have to stop the treatment if you get that, but I’d had quite a bit of it, probably about forty per cent of it.

And then I felt all right. My counts were pretty low and now there was a big debate, you know, how long would it last? Would the counts come up again? Was I cured?, if that’s not a meaningless word in this context, because they never actually ever tell you you’re cured. What was going to happen?

Okay. So how was the Campath administered? Was that intravenous or was that tablets?

It was intravenous. I was treated as an outpatient. I had to go, it was quite intensive, I think I was maybe three, perhaps four times a week, and it took most of the day. It was quite time consuming but at least I wasn’t an inpatient. So that was good.

And what’s the rituximab like? Hows that administered? What’s it like having it?

That was also administered intravenously and again that was quite time consuming. And you often feel, actually I think it was the Campath that caused, you know, to prevent a skin reaction you have to have some Piriton (chlorphenamine), and that makes you feel drowsy, so you have to wait quite a while before you can drive home afterwards. So the whole day really is in a sense wiped out. And yes, rituximab was also administered intravenously.

During that time there was a trial in the US for a vaccine for CML, and they said that it would probably work on those who had a lowish PCR* and were sort of stuck and not getting anywhere with Glivec. You did not have to abandon your drug, and it was in conjunction with taking Glivec. All expenses paid, put up in equivalent to a Travel Lodge or whatever over there in Connecticut. I knew the first batch, I made friends with the first batch of people who actually were there on the trial and they sort of said, Yeah, nothing in it really, little injection every night in bed, we’re having a ball going out having fun And I thought, huh, I can do with some of that So I thought, Okay. I’m going The team at the hospital in London was saying, Okay. Go. It can’t do you any harm. We’ll see

And my first experience of the US was pretty traumatic because they had to collect my cells in order to manufacture the vaccine. And this was pretty much of a disaster because the person inserting the cannula to actually collect the cells made a big botch up of it. And I put up with everything because to me this was a vaccine and this could work and it was worth doing, and all that really. I came back to London with the whole side of my neck out here because they had to actually insert it in my big sort of vein in my neck because they couldn’t get the right veins in my arms to actually do it. But then they did it in whatever way that obviously I had a massive, massive bleed. I came back here, hospitalised for them to CT scan me and actually see what damage had been done in the US. I could have sued them for a million by now with this but I didn’t. And to me it was an end in sight to all this so, you know, I was willing to walk on hot coals still. Anyway, nothing much happened. It all resolved and I was okay.

Then I went back to the US for three months to actually get a vaccine protocol and there was another few people there with me, you know, leukaemia patients, and we got a great community really, which was really good. I had a great time in Connecticut really, and seeing all the area. I went to New York and did lots of fun things but the vaccine amounted to nothing. I think my PCR* dropped quite considerably at the end of the course but then it came back to the level where it was at. So anyway, great experience. Tried it, didn’t work. Okay, carry on with Glivec really.

*PCR’ Polymerase Chain Reaction. A test whichlooks for genetic changes in cells. It can find one leukaemia cell among a million normal cells.