Lymphoma

Biological or Immuno therapy (antibody therapy)

Monoclonal antibody therapy is different from chemotherapy and radiotherapy because it targets lymphoma cells more specifically with less damage to normal cells. It does this by recognising and attaching to a specific substance on the surface of cells, which helps the cells to die and the immune system to attack them. One man had an antibody called CamPath (alemtuzumab) as part of preparation for a stem cell transplant.

Most people we spoke to who received immunotherapy had an antibody called rituximab or Mabthera, which targets a substance present on the surface of most B lymphocytes called CD-20. This treatment is therefore only suitable for people with B-cell non-Hodgkin lymphomas. At the time many of the people we talked to were treated, rituximab was a new treatment and not routinely available to everyone in the UK through the NHS.

Some got the treatment through having private health care, while another said his consultant had been permitted to give it to him before NICE had approved it. One had it because he lived in Scotland where it became available earlier than in England, and another moved area in order to obtain it (see 'Treatment decisions').

Could be given rituximab as first line treatment before it was generally available because she...

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Age at interview: 54

Sex: Female

Age at diagnosis: 54

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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, he's self-made, I'm enormously proud of him, he started life in a two-up-two-down, he's got this socking great house, I think he's 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.

Had first line treatment of rituximab with CHOP chemotherapy because it was available earlier in...

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Age at interview: 55

Sex: Male

Age at diagnosis: 52

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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 we're 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.

Rituximab was often used as a first line treatment in combination with chemotherapy such as CHOP, CVP or VP. One person had a single dose of rituximab between two doses of ESHAP chemotherapy. People whose lymphoma had relapsed were given rituximab either alone or combined with chemotherapies such as FMD or PMitCEBO although it is much more usual to have ICE or bendamustine now for relapses. Rituximab is infused into a vein; the first infusion is quite slow as some people suffer a bad reaction to it. Later infusions can be given more quickly. Most people were treated as an outpatient, but a few stayed overnight for the first infusion. The most common side effects of antibody therapy are flu-like symptoms; but some people experienced none.

Describes what it was like to have CHOP chemotherapy and the first slow infusion of rituximab.

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Describes what it was like to have CHOP chemotherapy and the first slow infusion of rituximab.

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Age at interview: 53

Sex: Male

Age at diagnosis: 51

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So again I went home obviously after the scans and I'd seen them and then I got appointments to come in for my first chemotherapy. Everything was explained to me what was involved, the type of chemotherapy, which was actually called CHOP, and the drugs that are involved, which I had, were cyclophosphamide, doxorubicin, vincristine and prednisolone. They were the main components of the chemotherapy which was called CHOP. And I really don't know exactly how that acronym is arrived at so but, you know, it's CHOP. So that was my chemotherapy which they were going to give me, but I also had something called rituximab or MabThera, which as I understand it is a sort of state-of-the-art antibody which locks onto cancer cells and helps them to sort of self-destruct. So I had the sort of conventional chemotherapy but I also had this other wonder thing, which was great to have that in the armoury to deal with the cancer.

I remember my first treatment, what they, well obviously I didn't really know what to expect but again I've always approached it in terms of I've got to do this to make myself better so I had to put up with it but obviously having a cannula put in your hand and it's just, well it's not a particularly pleasant process but had to be done. What happened was on each occasion I went in the day before, well when I say went in the day before, I mean obviously some of my treatment might start on that day, very often I'd go in on a Friday but what they do first is they do a number of checks and, you know, I think they check your body weight and everything because the chemotherapy is made up obviously especially for you, so there's a bit of a waiting time before the chemotherapy comes back. So normally they possibly would start my treatment late on a Friday afternoon and then often it would finish on a Saturday morning.

With the rituximab they do administer that very slowly through a drip, and the reason they do it very slowly is because some of the side effects are that you can get low blood pressure but also it can affect like the throat can swell up, tongue and so on, so they monitor you very carefully and will slow it down if there's any symptoms or I think you can get maybe raised temperature and things like that. Now the first treatment I had I remember I did feel like I couldn't swallow and it did pass within about half an hour but I mentioned that to the nurses and I'm really not sure to this day whether that might have been a bit of a psychological thing because I'd been told what the side effects might be. So I never really had a problem after that. So it may just be an initial reaction or it may have been me thinking I've got this problem.

Felt faint during her first rituximab infusion so it was stopped and restarted when she had...

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Age at interview: 61

Sex: Female

Age at diagnosis: 60

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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.

Had a severe allergic reaction to the first infusion of rituximab so it was stopped and restarted...

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Age at interview: 58

Sex: Male

Age at diagnosis: 51

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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, 'We'll 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.

Had no side effects from rituximab and said that it was much easier to tolerate than chemotherapy.

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Age at interview: 52

Sex: Female

Age at diagnosis: 45

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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 we've 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.

In July 2009 rituximab was approved by NICE for:

Treatment of diffuse large B cell lymphoma (high grade)
Combined with chemo as initial therapy of low grade lymphomas
Maintenance of first response in low grade lymphomas.

Rituximab is now widely available on the NHS.

In June 2011 rituximab was approved by NICE for:

“A possible treatment to maintain remission in people with follicular non-Hodgkin lymphoma. You should be able to have rituximab maintenance treatment if your follicular non-Hodgkin lymphoma has already responded to rituximab when given in combination with chemotherapy.”

Another type of monoclonal antibody therapy involves attaching a radioactive substance to a CD-20 antibody to deliver a dose of radiation directly to the lymphoma cells (radioimmunotherapy). Radioactive monoclonal antibodies that may be used to treat NHL include ibritumomab tixuetan (Zevalin) and tositumomab (BEXXAR). BEXXAR and Zevalin are not widely available in the UK and have not yet been assessed by NICE. This type of treatment has generally been used for people who have already had chemotherapy and rituximab or those whose lymphoma has not responded to other treatments. Some people we spoke to had been treated with a radiolabelled CD-20 antibody called Zevalin. They were given a single dose infused over 10-15 minutes from a syringe preceded by two doses of rituximab, one a week before the Zevalin, the other a few hours before. Side effects were nausea and aching, which subsided within a few days. They had to avoid close contact with other people for a couple of weeks to avoid contaminating them with radioactivity.

Had to be treated with Zevalin in a different hospital; explains how it was given, how he felt...

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Age at interview: 44

Sex: Male

Age at diagnosis: 33

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And then I think it was 2005 they called me in and they said that, 'There's 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.

His suitability for having Zevalin was assessed, he had two treatments with rituximab before the...

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His suitability for having Zevalin was assessed, he had two treatments with rituximab before the...

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Age at interview: 58

Sex: Male

Age at diagnosis: 51

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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 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 fifty-seventh 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. I was asked to stay in hospital for four or five hours afterwards just to make sure that I was OK. I was checked with a Geiger counter to make sure that it had actually flowed around my body, that it wasn't just sitting in one particular place, and at the end of the afternoon I could go home. My wife was able to drive me home but I had to sit in the back of the car rather than next to her because I was apparently emitting radiation, and anyone that got within two feet of me was at risk of some minor problems so I had to sit in the back of the car.

I got home, slept well, but the next day became quite unwell with nauseous feelings, aches and pains, and that lasted two or three days. But happily remembering that it had taken place on December 2nd, by Christmas Eve I was completely well, I felt completely well.

He was excited to be treated with the new drug Zevalin and the staff watched with curiosity.

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Age at interview: 58

Sex: Male

Age at diagnosis: 51

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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 he'd heard about from the US and I think he'd 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.

Less specific immune stimulants have also been used, including interferon. One man, diagnosed in 1993, was given interferon, which he or his wife injected three times a week under his skin for two years; then his lymphoma relapsed. Nowadays this drug is more commonly used to treat other types of cancer.

Alemtuzumab (MabCampath) is another monoclonal antibody that attaches to a protein that is found on the surface of B-cell and T-cell lymphocytes. It is only available for treating lymphomas as part of clinical trials. It’s being tested in clinical trials as a treatment for some types of T-cell lymphoma and in combination with chemotherapy before a transplant. Several other monoclonal antibodies are also being developed and these may be offered as part of research trials.

Last reviewed February 2016.
Last updated February 2016.