So the chemotherapy you had, that was rituximab wasn’t it?

Yeah well the rituximab, that’s the monoclonal antibody, it’s not the chemotherapy. I had rituximab plus the RVP I think it’s called, I’m not very good on acronyms. The thing is it isn’t CHOP. And I felt enormously privileged to get rituximab. I know very well it’s one of those drugs, one of the twenty-two cancerous drugs I read about last summer which are sloshing around in the bowels of the ineptly named NICE, the National Institute of Clinical Excellent. So yes, I think at my hospital they’re very, very, very, very smart and I think they, maybe they managed to wangle, I get the impression that an awful lot of people were getting rituximab who are on the National Health, and I thought, ‘Fantastic.

I felt rather ashamed to be having something that not everyone could have and I felt, I’ve always felt, my husband is rich, hes self-made, I’m enormously proud of him, he started life in a two-up-two-down, hes got this socking great house, I think hes amazing, it’s never gone to his head. And I’ve never taken it for granted that we do have lots of money and I’m in this incredibly and blessed position and it’s got responsibility, and why me? Why should I be so lucky? I’ve had the rituximab, I’ve had the private healthcare and all of that. But since I do have these good things I do appreciate them, I feel a bit apologetic for it sometimes, often, always, really. I can’t say I don’t love it because I do love it, I’d be mad not to.

And eventually they said after four weeks, ‘We think you can go home now and you need at least six doses of chemotherapy but you need to come back to hospital for your next chemo because were going to give you rituximab in addition to chemotherapy,’ this is what they call R-CHOP treatment, CHOP being the chemotherapy, R for rituximab.

The thing about rituximab is that it can cause problems, you know, with your, side problems, so they need to monitor your heart on the initial treatment in the hospital just in case, so that everything is available in case the worst happens, which is not likely but it’s just a possibility. So I think about two weeks after I came out of hospital I was readmitted for just one night so that I could get the second dose of chemotherapy under hospital conditions, and that seemed to go quite well.

Yes well I must admit when I saw the consultant I was very worried because I didn’t really know anything about lymphoma at that time and all you knew ‘cancer’, you know. But she did assure me that nowadays it wasn’t the end of the world, you know, there were treatments available now that weren’t available previously and the prognosis was much better than perhaps it was in the 50s or 60s, or even the 70s, because the rituximab treatment, which has been available over the last five years, increases your chances again from just straightforward chemotherapy. And I believe actually even since I was diagnosed that has become accepted as the gold standard now, whereas it wasn’t even when I was getting treated. In fact I was lucky, in Scotland rituximab in 2003 was freely available to everybody, but I believe in certain areas of Britain at that time it wasn’t. So there was a bit of a postal code lottery in that one.

So, I started my treatment straightaway and with the rituximab, I’d read that you could have a bad reaction the first time, and I’d been having it for about an hour or an hour and a half, I think, and I suddenly started to feel faint and I just managed to call a nurse who was nearby and say, ‘I’m going to faint’ and when I came round they were, you know, the circle of doctors and nurses round my chair, and they took me off it and then started it again, very, very slowly when I’d recovered and I think my pulse, would it be my pulse, went down to 41 or something, but it wasn’t the worst reaction that you could have apparently. You could, your breathing can be affected and all sorts of things but I had, I knew that I could have a bad reaction so I was, I thought, ‘Oh yes, this is part of the bad reaction’ so it wasn’t worrying and all the way along I’ve had the idea that if you know what the next step involves then you’re forewarned and forearmed and it’s much better, but I’ve instructed my family not to let me know if they read very negative things about what I’m going to go through, I just want to know what can go wrong but not the gory detail.

So it would be a 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 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 OK so they actually were able to get that first infusion of the therapy in. After that they were OK, 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.

And when I had my problem, totally professional. Because the drug had started to cause me some small side effects, this was the Mabthera drug, because it had started to cause me some small side effects early on in infusion, they’d actually said, ‘Well put you into bed rather than on a recliner,’ because the ward had got conventional hospital beds available. And that degree of forward-thinking and realising what could happen, it’s probably not, not too strong to say they saved my life. I was told that had they not recovered me that I would have been quite seriously unwell, they were talking of matters of minutes before my’ because my blood pressure just disappeared, I was struggling to breathe. But then I actually lost consciousness but my wife, who was nearby but pushed out of the way, said they just kind of went into overdrive. And one minute they were these kind of friendly nurses just in ordinary clothes chatting and having a cup of tea with you, and the next minute they’re doing what they do well.

I’m just thinking, somewhere in the middle of that I had rituximab. I had, yes I had rituximab as well and I’m just trying to remember, it’s so long ago. Between the first lot of ESHAP and the second lot of ESHAP I had rituximab, which is the antibody therapy. This was a very new cutting edge therapy at that time, very much tried and tested in the States but not really used an awful lot over here. And I was one of the, I think I was about the second or third patient that my consultant had actually used it on. So I had, I think that’s right, I had the rituximab and then the second lot of ESHAP and that’s when they told me that my bone marrow was clear and that I was in remission. I was never quite sure whether it was the ESHAP or the rituximab which cleared it but the fact was it was clear at that stage so I was considered to be in remission.

But as far as the treatment goes, with each of the treatments weve read the information from the Lymphoma Association and Cancerbackup. The staff at the hospital were excellent at talking about, you know, sort of explaining the treatment to us. And when it came to the rituximab we did look up quite a lot of information on, again from places like Johns Hopkins. We were given information from the hospital and we were certainly allowed to ask all sorts of questions and had a thoroughly clear understanding of the treatment before we chose whether or not to take it up. Which I did and it was very successful for me, you know, I had no reaction to the rituximab. On the whole it tends to be well tolerated, it was lot more, it was lot more tolerable than the chemotherapy I can tell you, much more comfortable to receive and you didn’t get the side effects in that way, so that was quite good.

And then I think it was 2005 they called me in and they said that, ‘Theres this new treatment that’s become available that we think you’re suited for. And basically it’s for people that have had all different types of treatment that have failed in the past and so I was an ideal candidate.

So this treatment came available and I went to another local hospital, I went to another hospital to have this treatment and it seemed to work. And since then, since July 2005 I’ve been quite well.

How did you feel about having a radioactive drug put into you?

I was, obviously I asked the question that, ‘Am I going to be safe walking, you know, having a radioactive drug going around my body?’ And it was quite funny really the only thing they said was, ‘When you go to the toilet make sure you don’t splash anywhere, and wash your hands properly. I don’t know what that meant like thinking am I going to burn things or something, you know? But it wasn’t like that at all. But no it was fine. And I didn’t have any symptoms at all, it didn’t make me feel sick, I didn’t have nausea at all with it. Oh sorry no I did, I did have a little bit straight after I had the Zevalin, the first few days when I came home I was, I did feel quite sick after that but that soon passed.

Were you actually sick?

No just really nauseous but I was on really good tablets, they were good tablets that you can get that stops nausea.

So how do they administer this Zevalin stuff?

It’s in a syringe and it takes fifteen minutes to give, and it’s just like a, just a syringe full, and that’s it.

Right, and how many doses of that did you have?

That’s just the one dose, just one dose.

Oh really.

Yeah what I had to have was, the week before, I had a course of rituximab and then the day of the Zevalin in the morning I had another course of rituximab and then in the afternoon I had Zevalin straight on top, and they find that the combination of the two works really well. And that was in July and we are now in January and I’m doing really well.

How did you feel about having a radioactive drug put into you?
Quite excited I guess, because my doctor had told me how revolutionary it was and how excited they were by the results they were seeing. And before I had it I had to go to a hospital with a nuclear medicine department and the professor who was in charge of that was also very excited because of the tremendously good results which hed heard about from the US and I think hed actually visited people over there. So yeah it was an exciting thing to do.
At the hospital when I had it done a lot of people actually came into my room to see it because it was so unusual, nurses and doctors kind of popped in to see how I was getting on. And also the actual administration of the drug was something a bit unusual. Because the, I suppose the syringe that it was carried in was radioactive it had to be carried in a protective box and then I had to be behind a shield, which the professionals stood the other side of, and they were very cautious and timed everything to the minute because they’re dealing with this I suppose potentially quite dangerous medication.
But no it was fine and I, because of my interest in all things scientific I suppose, I’d always wanted to know what the drugs were which I was having and what they were doing and how it was working, and by comparison to some of the other chemotherapies it actually seemed a lot safer. I mean it was explained to me once that the conventional chemotherapies have a kind of caustic effect and they burn the insides of your blood vessels as they go up. Which explained to me why I got pains in my forearms because obviously one month it was the left, another month it was the right, and I couldn’t understand for a while why my forearms were aching so much, and then one of the nurses said, ‘It’s because at that point it’s very, very concentrated of course and it’s literally burning away on the insides of your veins’, which is not something to actually look forward to. So the Zevalin was just a very clear liquid, absolutely no feeling of it going in, no sensation other than just of being infused and the usual thing which you get used to after so many years of treatment.
And how long did you have to stay more than two feet away from your wife for?
For a week.
It must’ve been a bit of a challenge?

It was. Well it was actually quite amusing because it wasn’t just that. When I went to the loo I was given all sort of dire consequences of missing and splashes and things like that, and that they had to be mopped up with copious amounts of water, lots of tissues, which then had to be disposed of safely. So we were warned against problems of going to the loo. We were advised and strongly warned against what was called intimate contact, being very, very polite about it. We were warned not to hold hands or do anything for a week and we, in fact sleep in separate bedrooms was the advice, which we did.
I was also told not to go anywhere near pregnant women and young children, which was quite ironic because my daughter was actually nine months pregnant and we were on stand-by to kind of take care of the kids if she suddenly went into labour, because her husband works overseas quite frequently. To complicate matters he actually got appendicitis ten days before the baby was due, which was just about when I was in hospital, so I think that was more distressing for me than anything else, the fact that if my daughter had needed me, or needed us, I actually couldn’t do anything. I couldn’t go near her or the grandchildren, we couldn’t have them here, we couldn’t go to them. And it worked out, but it wasn’t the best timing to have all of that treatment going on.