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Lymphoma

Chemotherapy

For many people chemotherapy has an emotive association with cancer. As one woman said, the first treatment was 'when it really hit me what was really happening to me'. Chemotherapy is the use of cytotoxic drugs to destroy cancer cells. Because cancer cells are dividing quickly they are particularly susceptible to chemotherapy. Chemotherapy is the first line treatment for most types of lymphoma and is sometimes used in combination with radiotherapy or immunotherapy.

A combination of several drugs is normally given over several days followed by a gap of a few weeks (known as a 'cycle' of treatment). It allows the body and blood cells time to recover from any side effects before the next treatment. Treatment will probably last for several months with regular check-ups.

Many different cytotoxic drugs exist and often a combination of several is used. These 'combination chemotherapies' are known by abbreviations such as ABVD, a combination chemotherapy used for Hodgkin lymphoma, and CHOP a combination chemotherapy for non-Hodgkin lymphoma (NHL). (For a list of combination chemotherapies for Hodgkin and non- Hodgkin lymphoma see Macmillan Cancer Support). Chemotherapy may also be used to treat relapsed disease and in high dose form as preparation for stem cell transplants (see 'High dose therapy and stem cell transplantation').

People with advanced low grade NHL may be treated with chemotherapy in tablet form, which can be taken at home. One woman said that the pills were also a visible aid in explaining to her four-year-old child about her illness and its treatment. A typical treatment regimen involves taking tablets daily for two weeks followed by two weeks' break, and repeating this pattern for about six months. Some people we spoke to were treated with a combination of tablet and intravenous chemotherapy.

 

Was reluctant at first to swallow her chemotherapy tablets because she was frightened of the...

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Was reluctant at first to swallow her chemotherapy tablets because she was frightened of the...

Age at interview: 47
Sex: Female
Age at diagnosis: 47
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So tell me a bit more about the treatment and what effects it's had on you so far?

OK. Well the first dose of fludarabine, I remember, they're tiny oblong orange tablets. I remember pushing them out of their covering and looking at these and not wanting to take them the first time at all. It was quite a psychological thing. It was the same as, I used to wear contact lenses and my eyes are very sensitive to all sorts of things, and I got to the stage where I'd get the contact, my finger a few inches away from my eye and I just couldn't make myself put the contact lens in because I knew it was going to make my eye sting. And it was like this with these tablets. I was just staring at these orange tablets not wanting to swallow them because I was sure that the instant I swallowed them I'd be having all the effects that you think of from chemotherapy' my hair would fall out straight away and blah, blah, blah. And of course none of that happened. I swallowed them and it was absolutely fine. I had not one side effect whatsoever from the fludarabine. 
 

 

Found chemotherapy in tablet form liberating and more manageable than having it intravenously in...

Found chemotherapy in tablet form liberating and more manageable than having it intravenously in...

Age at interview: 35
Sex: Female
Age at diagnosis: 31
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One of the main differences actually was that with ABVD all of my drugs, all of my chemotherapy drugs were given in hospital. So I went in for a day every fortnight and had them all intravenously. With ChlVPP I went in to hospital in a cycle. I went into hospital twice, in a 28-day cycle I went into hospital on Day 1 and Day 8 for intravenous drugs, but for days 1 to 14 I was taking drugs orally at home. So the vast majority of my treatment was at home, which' One of the hardest things about having chemotherapy is hanging around for it, waiting for it, sitting in hospitals for hours on end waiting for the pharmacy to make up the drugs. And it's absolutely fantastic being able to just take the drugs at home. That made a massive difference to the way that I felt able to cope with the treatment. 

So although it was quite hard work, again I found that over a period of months, I had three cycles of ChlVPP over three 28-day cycles, so three months. And it was, again it was cumulative. So by the end of the treatment I was thinking, 'I really don't think I can have any more of these drugs', and I was exhausted again. Less nausea, I was very sick the first time round and I was very sick on the first cycle of ChlVPP, but then the anti-sickness drugs completely sorted that and I didn't have any sickness after that. I was exhausted and I felt just generally under the weather. I described it to a friend like feeling like I was being poisoned, which I suppose in a way I was being, you know, the drugs are very toxic. So I just felt generally unwell but it was actually far more manageable than I found ABVD.

But it was actually very liberating taking tablets at home, which happened with ChlVPP. And yeah that was actually, that was much better, although it's a vast number of tablets to take. I was taking I think 13 in one go, which is boring but I would far sooner take 13 tablets than sit in a hospital waiting room for four hours or whatever waiting for the pharmacy to make the drugs up. So that was good. 

Intravenous chemotherapy is most commonly given in an outpatient clinic, but some people are kept in overnight. Patients who are very ill may be treated in hospital. Outpatient treatment typically involves spending a few hours in hospital having blood counts checked (see 'Blood cell counts and infection risk') followed by infusion of the drugs from a syringe or a bag into a vein in the hand or arm. The large size of the syringes alarmed some people.

Different drugs take different times to infuse and some are infused more slowly the first time. For some people it took 30 - 60 minutes, others were at the hospital most of the day. Some people saved time by having their blood taken at their GP's surgery the day before treatment. A typical treatment regimen would be one dose of chemotherapy every 2 - 3 weeks for six months. People were often anxious before their first treatment session because they didn't know what to expect, and some young people came to their first treatment session accompanied by several family members. People who lived close enough to walk to the hospital were glad because they wouldn't have felt able to drive home after treatment. One man did drive but had to get home quickly before he started to feel the effects of treatment.

 

Stayed in hospital overnight for her first dose of CHOP chemotherapy so her reaction to the drugs...

Stayed in hospital overnight for her first dose of CHOP chemotherapy so her reaction to the drugs...

Age at interview: 47
Sex: Female
Age at diagnosis: 42
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So following more sort of scans and things like that I started on a course of a chemotherapy which was called CHOP, and that consisted of, well the first treatment, it was 6 treatments, but the first treatment I had to go into hospital overnight to have that treatment because they weren't sure how I would respond to the treatment and I think my kidneys could have been at risk, and so they said that they would rather watch me, which was fine. I can remember that was July because Wimbledon was on. All the, I suppose the whole procedure had started in March. So an amount of time had sort of gone by. But I went in on a beautiful sunny day for my treatment and that just consisted of me having a needle put into my hand and then the treatment was administered fairly quickly. And it was absolutely fine. I remember walking around and talking to people in the ward and feeling fine really. So that was good. 

 

He spent several hours in a day unit every two weeks where the various chemotherapy drugs were...

He spent several hours in a day unit every two weeks where the various chemotherapy drugs were...

Age at interview: 37
Sex: Male
Age at diagnosis: 36
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So started the chemotherapy in a day room, just sat there and I was in for the day and the various drugs were put in and it was all explained to me very well before I started so it was, you know, the recovery rate was very good and everything. So we went in knowing what was happening and feeling quite positive about it. The first few lots of chemotherapy it was, the chemotherapy was every two weeks, it was initially they said six cycles, one cycle of chemotherapy was actually two lots of chemo in each cycle at two week intervals. So it was a month for a cycle with two lots of chemotherapy. 

Do you remember the name of the chemotherapy you were given?

The chemotherapy was ABVD, which is, there's a pink one, they put the needle into your arm, (a cannula is it?) a cannula into your arm, then there are four drugs the A, the B, the V and the D, I can't remember what they're all called. Two of them are put in from quite large syringes, you've got the saline going in and at the same time they put a syringe into the line and inject this. They also inject you with an anti sickness drug and I think a steroid is injected as well. Then the other two drugs, they're also on a drip and what they do is you have the saline going in and the drip with chemotherapy. I would go into the hospital at about 9.30, 10 o'clock and I would leave by about 3 to 4 o'clock, so it was a day sitting in an arm chair in a day room having the chemotherapy administered. 

The planned chemotherapy regimen didn't always work and some people had to have more treatments than originally planned or were started on a different drug combination. One person had fewer treatments than expected. A man who lived in a rural area had a treatment delayed because his car broke down and he could not get to the hospital. A woman became anxious when her treatment started late because a doctor hadn't signed a consent form, and again during another treatment when she had hoped to get away promptly but her drip kept falling out.

 

Was depressed when told that he would need two extra chemotherapy treatments because a scan after...

Was depressed when told that he would need two extra chemotherapy treatments because a scan after...

Age at interview: 37
Sex: Male
Age at diagnosis: 36
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We carried on, after three months of chemotherapy we had a halfway scan and everything was going well, it was, the lumps were all going down, there were, all of the lumps were believed to have been above my diaphragm, I was Stage 2 Hodgkin's disease. I had two lumps under my left arm, two under my collar bone, two in my neck and several in a sort of cluster under my sternum. The largest lumps were in this area and they were regressing at a pace that the doctors were all very happy with. I carried on with chemotherapy, got to the end of the six cycles, which we were hoping was going to be the end of it. 

I then had another scan after which we were told that no, there were still some lumps present, so we'd have to have a further two cycles of chemotherapy, which was, that was a shock, although we knew it was possible we really hoped that that would be the end of it, and so it was quite depressing to be told that you have to go and have further treatment. That was almost harder than the initial diagnosis because you think you've done it but then you're told, 'Oh no, there's going to be more'. And so we were told that that would happen. We were also told that there was a limit to how much chemotherapy you could have and that once you've had the eight cycles that would be it, you know, there was a possibility that I could have radiotherapy or start something else then, but that should be the end of it. 

So we carried on, there was a one month break whilst the scan took place and everything, and I did actually start to feel better after even just after a month off the chemotherapy, and then back in for another two cycles. So we had another two months of chemotherapy, which wasn't, the first cycle probably wasn't as bad as the latter ones of the six months because I've had this bit of a break, but then, again, as it sort of built up inside me it really started to knock me for six again. 

With repeated use veins collapse and harden and several people said that staff had difficulty inserting needles. Some people had a 'central line' (e.g. a Hickman or PICC) inserted into a vein in the chest or arm, which avoids repeated needles and makes it easier to give drugs and take blood samples. Problems can occur during insertion or removal of central lines, for example a man had one of his lungs accidentally punctured when his Hickman line was removed, though he recovered quite quickly. Central lines were usually left in throughout the treatment period and had to be regularly cleaned with a sterile liquid. Some people attended clinic weekly for this while others learned how to clean their central line themselves. Central lines commonly became infected and had to be flushed with an antibiotic or removed and replaced. One woman told us that her central line broke before her last treatment and her doctor wanted to give the treatment through a fine plastic cannula in her arm. She didn't like needles and was grateful that a nurse insisted on fitting a new line. 

 

Preferred to have needles put in his arm between his elbow and his wrist so bending his arm wasn...

Preferred to have needles put in his arm between his elbow and his wrist so bending his arm wasn...

Age at interview: 65
Sex: Male
Age at diagnosis: 52
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Anyway I went in and I had the first batch of treatment which basically meant you sat there for well anything from two to five hours waiting for this stuff to drip in your arm. Got home, felt OK for the first couple of days and then it hit you, and basically it was fludarabine and it was destroying quite a lot of me. And as you went on your blood had to recover, and when your blood had recovered, usually about a month, you could then have another treatment. And you went back in again and for a week you walked around with this needle stuck in your arm, and to those of you who are hairy-armed, as I am, shave them before you go in because these little sticky pads that they have move around on the hairs and if you don't have bare arms believe you me it's painful. And don't have them put in the hand because you bend your hand too much, the arm is the only place, it's straight and you can't muck it up. Trouble is they do have a propensity not to be able to find a vein, but that's another story. 

I insisted that they went, where possible, they went into my arm, between my elbow and my wrist so that the needle was actually into a part of my body which didn't bend. I mean what they like to do is put it in the back of the hand because the veins are nice and easy to see, but the hand bends which, although the needle is soft plastic, it still tends to irritate. You've got it in there for a week, it still tends to irritate and pull out, which means they've then got to go and find it or do it back again, and you're left at home with a needle hanging out or you've got to take it out and stop it yourself without the supervision. Whereas if they put it in the arm which has been shaved, the arm stays still and having no hairs on it the whole thing grips and you've got no problem. You're also slightly less likely to knock it because, as I say, this thing is in there from Monday morning through till, well, Friday afternoon.
 

 

Describes how a central line was inserted near her collar bone under a local anaesthetic and...

Describes how a central line was inserted near her collar bone under a local anaesthetic and...

Age at interview: 27
Sex: Female
Age at diagnosis: 25
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The procedure took about an hour to put in. They make a small incision in your collarbone, by your collarbone and they thread the plastic tube down into the vein. And then it comes out in your chest and then you have a long tube with two little attachments on it.

Well do they do that under a general anaesthetic?

No that's all done under local anaesthetic, which is a very strange sensation, people pushing and pulling things into your chest and out of your chest.

You can see it but you can't feel anything?

Yeah, you can just feel a little bit of pulling and tugging. But no, you can feel a little bit of warmth because you can feel sort of blood trickling out, which I guess is normal but a little bit alarming. Oh yeah it wasn't one of the most pleasant experiences.

And what was it like taking it out?

Taking it out was much, much quicker, was about twenty minutes. So a lot of pulling, the doctor looking very strange and trying to pull this thing out of your chest, a bit of a weird experience.

Presumably you've just got a tiny little scar from the Hickman line?

Yeah a couple of little scars' the one where they put it in; the one where the tube comes out of your chest, which is quite a prominent scar but I guess it doesn't really bother you; and then the little nick that they make to release all the skin that grows around the tube inside. Yeah.

Some people had their chemotherapy administered from a pump attached to their central line so that they could go about their daily business while the drugs were infused, but a woman said the regular noise of the pump made it difficult to sleep. Others said dressing was difficult with a central line in place and that they had to avoid getting it wet. Swimming was therefore banned and a young man was also told he should not play football but he did so anyway, with care, in order to feel normal. Many people said they had not originally liked the idea of having a central line but appreciated the benefits. 

 

For him a central line was a Godsend because it made things easier.

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For him a central line was a Godsend because it made things easier.

Age at interview: 24
Sex: Male
Age at diagnosis: 16
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Did you have a Hickman's line?

Yeah I had a, well I had a Groshon line, which was, it really did because when you have chemotherapy your veins sort of collapse, and the cannulas and things like that they have to be inserted again and again. So I had a Groshon line in my top part here, which was a real Godsend really because, I mean they have to take blood from you every day, and if it wasn't for the Groshon line I'd have to have blood taken from my vein, and I didn't like blood being taken. It wasn't as though it hurt that much, it was just, it did hurt but I just didn't like doing it and it was just so much more easy just to have these Groshon line things. It was a real Godsend really and they really did make things quite easy, especially for drugs, I mean I didn't have to have quite so many injections and it really did help, I mean all the chemotherapy went through them. I mean they did one, they do tend to get infected, when they do get infected then they become a problem but they're'

Did it happen to you or not?

I think towards the end I had a', there was a suspect of it becoming an infection and it was infected by', but I don't think that it, there was talk of it having to come out but it didn't come out in the end, I kept it till the end.

A central line can make people feel vulnerable. One woman's central line was very exposed and she hated having 'a tube hanging out of my boob'. When treatment finishes people often want the line removed as soon as possible. A man whose line was not scheduled to be removed quickly decided to have it done privately because he was 'so desperate' to have it removed. 

Chemotherapy can also be given using an implantable port, which is sometimes called a portacath or subcutaneous port. It consists of a thin flexible tube placed in a large vein, connected to a small chamber or “port” implanted under the skin of the chest, or sometimes the upper arm. Implantable ports are often used to give chemotherapy treatment and/or other medicines to both adults and children with cancer

Some kinds of NHL may involve the brain and spinal cord and can be treated by injecting chemotherapy into the fluid that surrounds the spinal cord using a technique called a lumbar puncture. Several people had alternate doses of this 'intrathecal' chemotherapy and intravenous chemotherapy. A man had to be sedated because of difficulties inserting the needle in his spine, but he enjoyed being able to sleep for the first few hours after treatment when he would otherwise be feeling at his worst.

 

Describes what it was like having chemotherapy injected into her spine, but only the thought of...

Describes what it was like having chemotherapy injected into her spine, but only the thought of...

Age at interview: 70
Sex: Female
Age at diagnosis: 69
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And you had the chemotherapy in your spine at the same time as you were having the CHOP, is that right or did they alternate it?

I did at that stage yes. Yes, in fact I had the spinal one first one day and then the first chemo the second day. And then there was a gap of about a month or so in between giving me more spinal chemos after that. But I had six in all over a period of six, seven, eight months. But they did those in, well it depended, sometimes I was actually in having the other chemo in hospital and sometimes I went to out-patients and had it done.

What was it like having the chemotherapy injected into your spine, was that gruesome at all?

It's a bit nerve-racking I think, you just, all you do really is just lean over, bend over onto a table with a pillow on and they just freeze it and then you can actually feel the needle going in but it doesn't hurt, it's just a, just for a few minutes, and then they put some more anti-, inject it to freeze it again, and then it's just a sensation really and the pressure of pushing the needle into the spine. But it doesn't last very long, it's only ten minutes at the most, and you have to lie down for an hour on your back afterwards in case you get headaches, apparently that was the reason, just to lie quietly for an hour after the injection. And then just get up and go about as normal. 

It doesn't really give you any after-effects from it, it's just the thought of it I think really that's a bit frightening but you get used to it, after that many you get used to it each time really. It's just a ten minute thing really, it doesn't take long, it doesn't hurt, just the pressure of, and they're asking you all the time, 'Is it hurting you? Because we'll give you some more, freeze it a bit more' but, and talking to you, asking you if you're all right, you know, keeping you quite stable in that respect. But no it's not a big problem. I mean it's over and done within a few minutes. 

I think they have to be very careful they don't touch anything themselves, I think they're the ones that have got the, whether they've had any mishaps I don't know, but there is a certain place they had to put the needle in the right place otherwise they could've caused some trouble. But I was fortunate that those came out negative each time they did it so it hadn't reached my spine. 

Several people said that the chemotherapy treatment units had a friendly atmosphere and that the nurses were very helpful and supportive. They could also get refreshments if they wanted them. Many enjoyed chatting to other patients and sharing a joke and likened it to having a little support group or family. One said, 'It really was a happy place considering what was going on there', and another declined the offer of a single room preferring to be with other people. A woman met two people she already knew among the other patients. 

 

Said the chemotherapy treatment suite was very comfortable, refreshments were provided, and the...

Said the chemotherapy treatment suite was very comfortable, refreshments were provided, and the...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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The nurses who administer the chemotherapy, I tend to refer to them as Macmillan nurses because I think some of them are, some of them may not be, but they just work within that area. The whole experience of having chemotherapy, at least in my hospital, is made as stress-free and as pleasant as possible. The nurses are not in uniform, they're just dressed in their civvies, if you like. The treatment suite has a set of very comfortable recliner chairs so that most patients get their treatment sitting in a recliner and you can put your feet up if you wish. There's generally music playing, you're brought tea and biscuits if you need it, if you're there for the day sandwiches will be provided at lunchtime. So, and they also take care to explain, you know, if one started to feel a bit hot or a bit uncomfortable they would explain, 'Yeah that will pass, don't worry'. But they keep an eye on you. Very friendly people. 

For more information see our Resources.

Last reviewed February 2016.
Last updated February 2016.


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