Chemotherapy for lymphoma Freephone helpline 0808 808 5555 www.lymphomas.org.uk

Freephone helpline 0808 808 5555
[email protected]
www.lymphomas.org.uk
Chemotherapy for lymphoma
Almost everybody who has lymphoma will need to have treatment with
chemotherapy at some time. There are many different types of chemotherapy used
to treat lymphoma and everybody’s experience will be different. But if you find the
prospect of having chemotherapy daunting, you are not alone. Many people find it
helps to learn a little more about their planned treatment and what to expect.
This information aims to answer the main questions that people being treated with
chemotherapy for lymphoma might ask:
●
What is chemotherapy?
●
Why is chemotherapy used to treat lymphoma?
●
How is chemotherapy for lymphoma given?
●
How will I feel while I am on treatment?
●
What can I do to help myself during treatment?
Please note: it would be impossible to mention all chemotherapy treatments given
for lymphoma, but the drugs in any of the regimens mentioned are listed in the
table on page 20. Your hospital will be able to supply you with more details of your
specific treatment if you wish.
What is chemotherapy?
Chemotherapy means ‘treatment with drugs or medicines’. Chemotherapy for cancer
or lymphoma means treatment specifically with drugs that kill cancer cells. These are
known as ‘cytotoxic’ drugs: ‘cyto’ means ‘cell’ and ‘toxic’ means ‘poison’.
How does chemotherapy work?
Lymphomas develop when lymphocytes start to grow out of control and build up in
lymph nodes or other organs. This is due to the lymphocytes dividing more often than
normal and/or not dying off when they should.
Chemotherapy drugs can work either by stopping cancer cells dividing or by triggering
them to die, or both. The problem with many of the traditional drugs is that they stop
cancer cells dividing but can also stop normal cells dividing. It is this that causes
many of their side effects. In recent years several new therapies have been developed
that more specifically target just the cancerous cells and some of these are already
available for the treatment of lymphoma.
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Traditional chemotherapy
When a cell divides it goes through what is known as the ‘cell cycle’, which makes two
new cells out of one. The cell cycle has a number of different phases (steps). Some
cytotoxic drugs work only on cells in one phase of the cell cycle, so any cells in the
affected phase are unable to divide. Other drugs work on any cell that is dividing no
matter what phase it is in. There is little or no effect on cells that are not dividing at the
time the chemotherapy is given.
Chemotherapy is very often given as a ‘combination regimen’, which means several
drugs are used together. To kill as many cells as possible in one go, drugs that work in
different phases of the cell cycle are usually combined. Combination regimens are often
known by a series of letters such as the initials of the drugs being used (eg ABVD) and
sometimes these spell out a word (eg CHOP). You will find the names of the drugs in
any regimens mentioned in this information in the table on page 20.
Even when several chemotherapy drugs are used together, some of the cancerous
cells will not be affected. This may be because they were not dividing or were not in a
particular phase at the time of the treatment. To kill these unaffected cells, the drugs
must be given again, usually several more times.
The problem is normal cells are also damaged every time chemotherapy is given. Those
cells that naturally divide most often are most likely to be damaged. These include cells
within the bone marrow, which make blood cells, within hair follicles and lining the
mouth and bowel. To allow time for these normal cells, especially the bone marrow
cells, to recover, the chemotherapy is followed by a ‘rest period’. These repeated doses
of chemotherapy and rest periods are known as ‘cycles’ of chemotherapy.
The following diagram shows the first three cycles of a 3-weekly schedule with the
intravenous drugs given on the first day of each cycle, followed by 5 days of oral
prednisolone (steroid) then a rest period of 16 days.
R-CVP therapy
Cycle number <--------------1------------->
Week
*
<-------------2--------------> <-------------3------------->
*
*
*
Δ
Δ
Δ
1
Rituximab
(intravenous)
2
3
4
5
Cyclophosphamide
(intravenous)
Prednisolone
(oral)
6
7
Δ
8
9
Vincris­ne
(intravenous)
Rest period
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Targeted therapy
Targeted therapies are those that have been developed to target something that is
specific to the lymphoma cell. For example, they may target:
●
a protein found on lymphoma cells more than on normal cells
●
an action that is more important within lymphoma cells than within normal cells
●
the mechanism that stops lymphoma cells dying when they should.
Targeted therapies are useful because:
●
they kill lymphoma cells in different ways from traditional chemotherapies
●
they have little or no effect on normal cells, so do not have the same side effects.
Where do chemotherapy drugs come from?
Many cytotoxic drugs have been developed from substances that occur naturally, often
in plants. A good example of this is the periwinkle, the flower we use in our logo, from
which we get ‘vinca alkaloids’. The drugs vincristine and vinblastine, both of which are
used to treat lymphoma, are types of vinca alkaloid.
Traditional chemotherapies were mainly discovered by trial and error, with laboratory
testing of which cancer cells were killed by which drug. Many of the drugs used
to treat lymphoma can treat other types of cancer too. Most drugs used today are
substances that have been slightly changed (modified) in the laboratory. These changes
aim to make them more toxic to cancer cells or less toxic to normal cells.
In contrast, targeted therapies have generally been developed for a particular type of
cancer. They rely on understanding what it is that makes a particular cell cancerous.
As scientists gain more knowledge of this, so drugs that target the differences between
normal and cancer cells are being designed.
Any new drugs go through a very long period of careful testing. This begins with tests
on cells in laboratory test tubes. For the most successful drugs only, it ends, usually
many years later, with clinical trials (medical studies in people with lymphoma).
Why is chemotherapy used to treat lymphoma?
Chemotherapy is in most cases the best treatment for lymphoma. This is because
most lymphoma cells are easily killed by cytotoxic drugs. But also lymphomas are
different from many other cancers as they are cancers of blood cells, which naturally
move around our bodies. Because of this, most lymphomas are already in many places
by the time they are diagnosed. Surgery will not be able to remove all the cancerous
cells, most of which cannot even be seen.
Even for those lymphomas that appear to be in one area only, surgery will usually
leave some cells behind. These lymphomas are usually better treated with localised
radiotherapy (X-ray treatment) but even then chemotherapy is often given too.
The advantage of chemotherapy is that it gets to almost all areas of the body so will
treat the lymphoma wherever it is. It will also treat lymphoma whether it is a lump
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of cells together or one or two cells on their own. As a result, chemotherapy can
successfully treat many lymphomas, even some which are advanced.
Over the years different chemotherapy regimens have been found to be better for
certain types of lymphoma. Typically lymphomas that are fast growing need more
intensive chemotherapy. Your doctors will choose the best regimen for you taking into
account:
●
your lymphoma type
●
the areas of your body that are affected
●
the symptoms or problems that your lymphoma is causing
●
your general health and fitness.
How is chemotherapy for lymphoma given?
Chemotherapy for lymphoma can be given:
●
by mouth (orally)
●
into a vein (intravenously)
●
into the cerebrospinal fluid, which surrounds the brain and spine (intrathecally).
It is quite likely only some of what is described here will apply to you. Ask your
hospital team if you are unsure what your regimen will involve. You may want to
skip the parts in this section that don’t apply to you.
Oral chemotherapy
Oral chemotherapy is treatment that is taken by mouth, in the form of either tablets or
capsules.
You may be taking chemotherapy that can all be given orally. In this case, your
treatment will be prescribed by the doctors in the outpatient clinic. You will probably
collect it from the hospital pharmacy to take home with you. Alternatively, you may
need to take oral chemotherapy as part of a combination regimen. In this case, you’ll
probably be given the medicines by the nurses when you attend for the intravenous
part of your treatment.
The person giving you the medicines should tell you what to take and when. This
information will also be on the boxes or bottles containing your treatment. You may
also be given special instructions or advice about how you should store the tablets or
capsules and/or how you should take them.
It is important that chemotherapy drugs are not handled by anyone other than
the person who is taking them. If you are a carer assisting someone to take their
chemotherapy, you should wear gloves when handling any tablets or capsules.
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Intravenous chemotherapy
Intravenous chemotherapy means that drugs are given into a vein. This is the
commonest way that people receive chemotherapy for lymphoma.
Most often intravenous chemotherapy for lymphoma is given through a cannula.
This is made up of a soft plastic tube and a needle within it that allows the tube to be
put in. Your nurse or doctor will insert the needle into a vein, usually on the back of
your hand or in your lower arm. The needle is then removed, leaving only the plastic
tube within the vein. This is secured with an adhesive dressing to keep it clean and in
position. Usually a cannula is taken out before you go home.
Some intravenous drugs are given as a ‘bolus’ or a ‘push’ dose. This means that the
nurse injects the drug through the cannula over a short period of time.
Other intravenous drugs are given as an infusion (a drip), where they are mixed
with another fluid in a bag. The bag of fluid is set up to drip through the cannula over
a specified period of time. The bag needs to be kept higher than your arm, so will
usually be hung on a metal pole. Often the pole is on wheels, so you can walk around
while the drip is connected. You might have more than one bag going at the same
time. You might need to go to the toilet more often as you may be given a lot of liquid
over a relatively short time.
Drugs given as infusions are often controlled with pumps (small machines to maintain
the correct speed of flow) that can be attached to the pole. They may ‘beep’ from time
to time to let the nurses know if something is not right. This might sound alarming at
the time, but don’t worry as the drip will stop until the problem is sorted out.
Intravenous chemotherapy can sometimes make your arm sting. Do tell the nurse
if you feel any discomfort while receiving your treatment. Very occasionally the drug
may not go into the vein but may go into the surrounding tissues and cause damage.
This is known as 'extravasation'. The nurse giving your chemotherapy will be trained in
how to deal with this complication if it should occur.
Some people will need to have their intravenous chemotherapy given through a
central venous catheter (a more permanent intravenous tube) instead of a small
cannula. These make it easier to give drugs and other fluids over a longer period of
time and to take blood samples without the discomfort of repeated needles. Mostly
they are used for people having certain types of chemotherapy, usually those spread
over longer periods of time. They may also be used for people who have particular
difficulties with normal cannulas being put in.
There are two types of central venous catheter: a PICC line (peripherally inserted
central catheter) or a tunnelled central line. Both types of line end in a bigger vein
that is further inside your body. The line is inserted during a small operation that
usually requires a local anaesthetic. Blood is prevented from flowing back into the line
either by a tiny valve at the end of the line or by a plastic clamp on the external part of
the line.
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A PICC line usually goes in through a vein in your arm at the level of your elbow. It is
held in place by a dressing or sometimes a few small stitches.
A tunnelled central line is usually positioned on your upper chest. Part of the line runs
in a tunnel under your skin, which reduces the risk of infection. It will be held in place,
at least at first, by a few small stitches and will be covered with a clear dressing. You
may hear these called a Hickman® or Groshong® line.
A tunnelled central line
The line is
inserted
into the
chest here
Superior
vena cava
Catheter
tunnelled
under
skin
Tip of
central
catheter
Heart
The line
comes
out here
Clamp
Connection
for drips or
syringes
Central venous catheters are designed to stay in place for long periods, hopefully for
all of your treatment. The line will be covered to protect it when you go home and
you will be given instructions about how to care for it. Despite this, lines can become
infected. If you develop a temperature, feel shivery or if the area around the line
becomes red or sore, you should contact your hospital immediately.
Another complication of central venous catheters is that they can sometimes trigger
a blood clot to form around them. People with lymphoma or other cancers also have
a higher risk of forming blood clots in their legs, especially if they are not very mobile.
Contact your hospital immediately if your arm or leg becomes swollen, painful or red
or if you suddenly develop shortness of breath or chest pain.
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Intrathecal chemotherapy
Intrathecal chemotherapy is an additional treatment that is given into the cerebrospinal
fluid. This is the fluid that cushions and protects the central nervous system (the brain
and spinal cord).
Intrathecal chemotherapy is a way of bypassing the ‘blood–brain barrier’, which stops
many drugs crossing from the bloodstream into the cerebrospinal fluid. It is usually
given by a senior doctor during a lumbar puncture.
Lumbar puncture
Sometimes intrathecal chemotherapy may be given through a device called an
Ommaya reservoir. This may be put in to avoid the need for lots of lumbar punctures.
This type of treatment may be used to treat lymphoma that has been found in the
central nervous system (CNS). Alternatively, it may be used as a preventive therapy,
particularly in certain types of high-grade lymphoma, which is known as ‘CNS
prophylaxis’.
Please contact our helpline (0808 808 5555) for further information if either of these situations applies to you.
Will I need to be in hospital for my treatment?
The commonest types of chemotherapy for lymphoma, including R-CVP, R-CHOP
and ABVD, are usually given in a day-care unit. In some areas they may be given in a
mobile chemotherapy unit. Some chemotherapy, such as chlorambucil (Leukeran®), is
entirely oral and you may need only to visit an outpatient clinic. Other more intensive
regimens, such as R-CODOX/M-IVAC, can only be given to people who are inpatients.
Your hospital team will be able to tell you where your treatment will be given.
No matter where your chemotherapy is being given, you may still need to be admitted
to hospital if you develop problems such as infection (see page 9).
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What other drugs will I have with my chemotherapy?
It is very likely you will need to have drugs other than the actual cytotoxic drugs as
part of your chemotherapy. These often form important parts of your chemotherapy
regimen.
Steroids
Steroids are included in many chemotherapy regimens for lymphoma, most often as
tablets called prednisolone. Steroids help to kill lymphoma cells, although on their
own any effect would be very short term. They can also help to reduce nausea and
may improve your appetite and energy levels.
Their disadvantages may include:
●
difficulty sleeping – always take your steroids early in the day
●
weight gain – this may or may not be a good thing for you
●
indigestion – you may be given a tablet to help with this
●
mood swings and irritability – let your hospital team know if these are troubling you
●
raised blood sugar levels – if you’re already diabetic or on the border for developing
diabetes, this may cause problems and you will probably need advice from a
diabetic specialist. Symptoms to look out for are thirst, passing lots of urine, having
frequent infections (especially thrush) and blurring of vision.
Rituximab
Rituximab is a type of targeted therapy. It is a monoclonal antibody that attaches to
the CD20 protein on the surface of B-cell lymphoma cells. It is very often given in
combination with chemotherapy as it leads to improved success rates.
Please contact our helpline if you would like more information about rituximab
therapy (0808 808 5555).
How is chemotherapy likely to make me feel?
It is not possible to say exactly how you will feel while having chemotherapy or in the
months afterwards. This is partly because it will depend on what drugs you are having
and at what dose. But even people having the same drugs can feel quite different.
Your hospital team will be able to tell you what your treatment involves and what side
effects you are likely to have.
Many side effects are short term and will go away once you stop treatment or within
a few months. It is important that you let your team know about any symptoms you
have as often there are things that can help you. There may also be things that you
can do to help yourself (see pages 14–18).
Unfortunately a few side effects may be long term or even permanent. Your team will
discuss any possible long-term effects with you before you start treatment.
The following are some of the possible side effects. It is important to remember you
won’t necessarily develop all the problems you’ll be warned about or read about in
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this leaflet. Some people are lucky enough to have relatively few side effects. Despite
this, many people find it helps to know what might happen and what it could mean in
advance. Also, remember whether you have a few side effects or many is not a sign
of whether your chemotherapy is or isn’t working.
You don’t have to read everything in this section at once. You may prefer to read
the details of only those side effects that your team have told you are likely with
your specific treatment. You could always come back to further parts of this section
later if you develop a particular side effect.
Side effects seen with many different drugs
Low blood counts
The most important side effect of chemotherapy is damage to the bone marrow,
which is a sponge-like tissue in the centre of some of our bones. The bone marrow is
responsible for producing the body’s blood cells. These include:
●
white blood cells to help fight infection
●
red blood cells to carry oxygen around your body
●
platelets to form a blood clot and stop you bleeding.
When chemotherapy drugs affect dividing cells, they stop the normal bone marrow
producing the new blood cells you need. You will have regular blood tests taken during
your treatment to check your blood counts.
Neutropenia
he most important white blood cell is called a neutrophil. You may hear a low white
T
cell count referred to as neutropenia, meaning the number of neutrophils is low.
Neutropenia is common after many types of chemotherapy and means you will be
more at risk of infection. The neutrophil count tends to be lowest about 7–10 days
after each dose of chemotherapy, but it can take some time to recover.
Infections when your neutrophil count is low can be serious and may even be lifethreatening. You should be given phone numbers to contact at any time of the day or
night. You should call immediately for advice if you develop signs of an infection, such
as:
●
temperature above 38°C
●
fever, chills and sweating
●
feeling generally unwell or disorientated
●
cough or sore throat
●
redness or swelling around lines or sores on the skin
●
mouth sores and ulcers
●
diarrhoea
●
burning sensation when passing urine.
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Even without any infection, your next cycle of treatment cannot be safely given until
your blood count has recovered. A low neutrophil count may sometimes lead to a
delay in your treatment. This can be frustrating but it could be dangerous to go ahead
too soon.
Your doctors may suggest you have drugs known as growth factors or G-CSF to
help boost your white cell count. Growth factors are hormones that occur naturally
in our bodies and help the bone marrow to produce more white blood cells. G-CSF is
given as an injection into the fatty tissue under your skin (known as a 'subcutaneous'
injection). Most people learn to give the injections themselves or a relative may be
taught how to give them. The injections use a tiny needle. They are given into your
stomach, the top of your leg or the top of your arm.
-CSF can cause side effects such as flu-like symptoms, back pain and headaches.
G
You should ask your hospital team about what you can take to help with this. The
injections can sting. If your brand needs to be kept in the fridge, it may help to take
the injection out 20 minutes before you use it. Let your hospital team know if you
have any unusual symptoms or feel unwell during your growth factor treatment.
Anaemia
A shortage of red blood cells is called anaemia. Anaemia may make you feel short
of breath, or extremely tired and fatigued. Sometimes lymphoma itself may cause
anaemia. When anaemia is due to chemotherapy, it usually becomes a problem only
after a few cycles of treatment. If it becomes bad enough, your doctors may suggest
you have a blood transfusion to ease your symptoms for a while. Anaemia usually
recovers gradually in the weeks following treatment.
Thrombocytopenia
Platelets are the tiny fragments that form a blood clot and help to stop you bleeding.
A shortage of platelets is called thrombocytopenia. The risk of bleeding remains
small unless the platelet count gets very low. This tends to happen mainly with the
most intensive types of chemotherapy. If the doctors feel your risk of bleeding is
very high, you may be given a transfusion of platelets to reduce the risk. This is a
temporary measure as the effect lasts only a few days.
Whatever type of chemotherapy you are having, you should contact your hospital
team for advice immediately if you develop:
●
bleeding (for instance in your mouth, from your nose, in your stool or urine)
●
unusual and unexplained bruising.
As with your neutrophils, it is important that you have enough platelets again before
your next cycle of chemotherapy is given. This is just a matter of waiting for your
bone marrow to recover. Thrombocytopenia usually recovers quickly once your
chemotherapy is completed.
Please contact the helpline if you would like to talk more about particular side
effects or how your treatment has affected you (0808 808 5555).
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Nausea and vomiting
This is probably one of the first side effects people think of when they are told they
need chemotherapy. It is true that after treatment with many chemotherapy drugs you
could feel sick and possibly even vomit. But anti-sickness drugs (antiemetics) often
work very well and can control or prevent nausea for most people.
Your antiemetics will be chosen based on the type of chemotherapy you are having
and how likely it is to make you sick. You may need several different antiemetics both
before and after your treatment that work in slightly different ways. If you do feel sick,
make sure you tell someone because sometimes a change of antiemetic is needed.
Hair loss
This is another side effect people often think about when told they need chemotherapy.
Hair loss can happen with many of the regimens and drugs used to treat lymphoma
(eg CVP, CHOP and ABVD). But some of the oral therapies (eg chlorambucil) are
unlikely to cause major hair loss.
Hair loss can vary from thinning to complete loss. With more intensive regimens,
there may even be hair loss from other areas of your head and body, including
eyebrows and eyelashes. If you are going to lose your hair, it will typically start to fall
out within a couple of weeks of starting treatment. Usually it falls out gradually but for
some people it can happen quite suddenly. This can be distressing but it helps if you
are prepared.
Your hair will usually start to grow back within a month or two of completing your
treatment. Some people find that their hair has changed when it grows back, perhaps
being curlier or a slightly different colour. It might take 6–12 months for your hair to
return to its previous thickness.
You may hear about a method called 'scalp cooling', which uses a 'cold cap' to reduce
hair loss. This is not recommended in lymphoma because lymphoma cells in the
bloodstream could be in the scalp and wouldn't be killed.
Sore mouth
Many chemotherapy drugs cause soreness in the mouth (known as 'mucositis').
This is because the cells that line the mouth need to divide often and are damaged
by chemotherapy. Mucositis can be painful and can make you more prone to mouth
ulcers and infection. You will be given advice about how to look after your mouth. This
may include using non-alcohol-based mouthwashes and/or treatments to prevent
infections such as thrush (candida). Tell someone if your mouth feels sore as there are
often things that can be done to help.
Change in taste, appetite and weight
You may find that foods taste different or perhaps metallic while you are having
chemotherapy. You may also lose your appetite, although if your regimen includes
steroids it is possible you'll actually eat more. Poor appetite and change in taste along
with nausea may lead to a loss of weight while on chemotherapy. This will improve once
your treatment is finished but if it is causing a problem it may help to see a dietitian.
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Fatigue
Fatigue is one of the commonest symptoms reported by people with lymphoma.
Often it is difficult to know whether it is due to the lymphoma itself or a side effect of
treatment. In fact it is likely to be caused by a combination of factors, which may also
include anaemia, not eating well or feeling depressed.
Fatigue is not like normal tiredness. It can mean that you find it difficult to concentrate
or make decisions. It may make you short-tempered. You might sometimes feel
too tired to do even simple things, like watching television. Fatigue can be difficult
to describe and you may find that other people (even your doctors) don’t really
understand it.
Unfortunately many people find that it may be months after their treatment before
their fatigue really improves.
Skin and nail changes
Your skin may become dry or more sensitive during treatment and it is important
you take care in the sun. You should wear a high SPF (sun protection factor) cream
when outdoors as you may burn more easily during treatment and for several months
afterwards. Your nails may also become more brittle or darker, and may develop ridges.
Side effects seen with certain drugs only
Peripheral neuropathy
Some chemotherapy drugs can cause damage to the nerves that carry information
about touch, temperature and pain sensation. They can also damage the nerves
involved in muscle movement. This is called 'peripheral neuropathy'.
Peripheral neuropathy is usually related to particular groups of drugs. These include
the vinca alkaloids used in many lymphoma regimens (eg CVP, CHOP, ABVD and
CODOX) and platinum-based drugs (eg in ESHAP or ICE). The new targeted drug
bortezomib (Velcade®) is also known to cause peripheral neuropathy.
The nerves in your hands and feet will most commonly be affected by peripheral
neuropathy, but other places might be affected too. It can cause:
●
pins and needles
●
pain
●
numbness
●
clumsiness
●
problems with balance
●
increased sensitivity to heat
●
constipation.
Symptoms of peripheral neuropathy usually develop soon after you start treatment,
but not everyone will get them. If you do have any of these symptoms, you should tell
your doctors or nurses before you have your next dose of chemotherapy. They might
want to make a change to your treatment to prevent these problems getting worse.
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For most people the symptoms of peripheral neuropathy will be temporary, lasting
weeks or months after their chemotherapy. Unfortunately nerve repair is slow, so for a
few people with more significant nerve damage, the symptoms may be long term or
even permanent.
Bowel changes
Some chemotherapy drugs may cause diarrhoea but typically this only occurs when
they are used in larger doses (eg high-dose cytarabine or methotrexate). Other drugs,
especially those that cause peripheral neuropathy, may cause constipation. This
may be made worse if you are weak, not eating well, not very mobile or on strong
painkillers.
Flu-like allergic reaction
This tends to happen for certain drugs only, either during the infusion or within the
first few hours afterwards. Symptoms may include fevers, shivering, headaches,
aches and pains, and a rash. Rarely more severe reactions may occur. Allergic
reactions may be seen with antibody therapies (eg rituximab) and with bleomycin
(eg in ABVD) or platinum-based drugs (eg in ESHAP or ICE). For these drugs, you
may be given a small test dose first or the treatment may be started very slowly.
Sometimes other drugs, such as steroids and antihistamines, are given prior to
treatment to reduce the risks.
Bladder problems
The drugs cyclophosphamide (particularly in a high dose) and ifosfamide (Mitoxana®)
can cause irritation to and bleeding from the lining of the bladder and the kidneys.
You will need to drink lots of extra fluid with these treatments. You may also have
extra fluid through your drip. A drug called mesna (Uromitexan®) can be given with
ifosfamide and with cyclophosphamide when used at a high dose to prevent bladder
and kidney complications.
If you notice blood in your urine after having chemotherapy, you should tell your
medical team straight away.
Hearing changes
The drug cisplatin (eg in ESHAP) may cause hearing loss, especially for high-pitched
sounds, or tinnitus (a continuous ringing or buzzing in the ears). It is important to tell
your medical team if you notice any changes during your treatment.
Heart problems
The group of drugs known as the anthracyclines, which includes doxorubicin
(eg in CHOP and ABVD), can cause serious damage to the heart. Often the problems
may develop many years later. Your heart function may be tested before you start
treatment. The drugs may be avoided if your heart function is not good or if you have
a history of previous heart trouble. Even if your heart is normal, your doctors will be
careful not to prescribe more than the safe maximum dose.
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Lung problems
Lung problems are a recognised side effect of bleomycin (eg in ABVD). Your lung
function may be tested before you start treatment. The drug causes inflammation
within the lungs, which can result in cough and shortness of breath. You should report
any symptoms immediately as your treatment may need to be changed so that there
is no permanent damage.
Long-term side effects
Fertility
Depending on your stage of life this may not be an issue for you but some treatments
for lymphoma may reduce your fertility. This is due to damage to the testes or ovaries.
It will not be possible to say for certain how your fertility might be affected. Typically,
higher doses of chemotherapy such as those used in stem cell transplants are more
likely to affect fertility. Some regimens (eg ABVD) will leave most people still able to
have children.
In women, reduced fertility is related to age, with younger women more likely to
remain fertile. Women may find that their periods become irregular or stop altogether
during treatment. Afterwards, their periods may return to normal or may remain
irregular and some women may undergo an early menopause.
Your doctors should discuss the risks of your type of treatment and any options with
you before you start treatment. Men may wish to consider sperm storage before they
start treatment. The options for women are more limited, but you may be referred to
a fertility specialist if you would like to discuss these further and there is enough time
before you start chemotherapy
Although your chemotherapy may make you less fertile, you should still use
contraception while you are having treatment (see page 18 for more information).
Second cancers
People who have had successful chemotherapy have a slightly higher risk of developing
another form of cancer, including leukaemia, some years later. Many trials are now
looking at ways of reducing the amount of chemotherapy given, the aim being
successful lymphoma treatment but with fewer second cancers.
How can I help myself while having chemotherapy?
It is important that you look after yourself well while you are on chemotherapy, not
just physically but also emotionally. You will probably find it helps to know something
about your lymphoma and the treatment you will have. This can help you to feel more
in control and allow you to take part in decisions about your care. Make sure also you
let your hospital team know how you are feeling. They won’t always ask and might
assume you are OK if you don’t say anything.
Please contact our helpline (0808 808 5555) if you would like to talk more about
any of the following suggestions.
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General suggestions
Ask questions
Don’t be afraid to ask questions. Even if you think someone has already tried to
explain something to you, if you don’t understand then ask. And don’t worry that your
question may seem silly because, whatever it is, you almost certainly won’t be the
first to ask. Your hospital team and your GP are there to help you and would much
prefer you not to worry unnecessarily.
Know how to get help
Problems often develop out of working hours. You should be given phone numbers
to contact at any time of day or night if you start to feel unwell. Make sure you keep
these easily to hand, especially if you’re away from home. You may not always be able
to talk to someone who knows you, so it helps if you can tell people what type of
lymphoma you have and what treatment you are on. You may be given this information
on a card, but if not, ask someone to write it down for you. And don’t worry about
remembering all the names of the drugs, everyone will know what you are on if you
say CHOP, for example.
Look out for signs of infection and act quickly
Keep a thermometer at home and with you if you are out, and know how to use it.
Keep the emergency contact numbers handy and make sure a relative or friend knows
where to find these if needed.
Always ring for advice if you are concerned. A high temperature (above 38°C) always
needs to be reported immediately as infections can be serious. Be aware that feeling
hot, cold, shivery or generally unwell without a temperature could still be a sign of
infection, especially if you are taking steroids.
Try to avoid getting infections
You are likely to be more prone to infections and may be less able to shake them
off while on chemotherapy. You can’t avoid all infections, no matter what you do, but
being sensible can reduce the risks:
Stay away from people with infections such as colds, flu, diarrhoea, vomiting and
chickenpox, if possible. Stay away from crowds, so avoid cinemas, busy shops, and
rush-hour buses and trains, for example.
● Wash well and regularly. Wash your hands before meals, after using the toilet,
after using public facilities, or after handling pets. It is best to wear gloves when
gardening or dealing with pet litter trays.
●
Food hygiene is very important. Make sure food is fresh and has been stored
properly. Make sure it is thoroughly cooked and don’t reheat things. You may be
advised to avoid certain food types that could put you more at risk of infection. This
is often called a ‘neutropenic diet’. Your hospital team will advise you whether you
need to take any special precautions, depending on your type of chemotherapy and
how low they expect your blood counts to go. Further information is also available
from our helpline (0808 808 5555).
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If you have a central line, make sure you follow the advice you are given on how to
look after it. Contact the team immediately if there is redness, soreness, swelling or
a discharge around the line.
●
Invasive dental work is best avoided while you are on chemotherapy treatment.
This is because you will be at increased risk of infection and/or bleeding. You should
discuss with your hospital team if you have any problems with your teeth.
●
Lifestyle issues
Eating
You may find it harder to eat well while on chemotherapy, but it is important you eat
enough to you keep your strength up and vital that you drink enough liquids. Discuss
whatever is stopping you eating with your team. There are often things that can be
done to help nausea, sore mouth or difficulty swallowing.
The following guidance may help if you are finding it difficult to eat or are losing weight:
●
Try to eat little and often and definitely at any time you are hungry, even if this isn't
a mealtime.
●
Have a ready supply of snacks or things that are quick and easy to prepare.
●
Eat what you fancy, even if it is something you'd normally resist.
●
●
Try different things too: you may prefer stronger tasting foods or something savoury
instead of sweet.
Try allowing food to cool a little before eating it warm rather than hot if your mouth
is sore.
If you still aren't managing to eat much, nutritious drinks to supplement your diet may
help. But this is best discussed with a dietitian or your hospital team first.
Smoking and alcohol
If you are a smoker, this may be a difficult time to stop but do try to stop or cut down
if you possibly can. Smoking makes you more prone to chest infections. These can
become a real problem if your blood counts are low from chemotherapy and your
immunity is down too. It could also increase your risk of developing a second cancer in
the future.
Alcohol is less of an issue as long as you drink in moderation and your liver is
working well.
Exercise
There is no doubt that taking some exercise can make you feel better during
chemotherapy. If you didn’t exercise regularly before, just a gentle walk whenever
you feel up to it may help. If you were someone who did exercise before, it may be
best to check with your team. You may not have the energy for strenuous activity
anyway but some things may not be advisable. For example, it might be best to avoid
high-impact or contact sports if your platelets are low. Swimming in public pools may
also put you at more risk of picking up infections.
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Sleeping
Although gentle exercise can help, rest and enough sleep are also important to how
you feel. Sleeping can be difficult if you are taking steroids. Try to take all your steroids
early in the day, before lunchtime if you possibly can. Take short naps in the day if you
need to and allow yourself to rest when you feel tired.
More tips
Coping with fatigue
For many people with lymphoma, coping with fatigue is one of the hardest things.
There may be things you can do to help yourself:
●
eat well
●
try taking regular light exercise
●
●
●
get plenty of rest throughout the day and aim for a good night’s sleep on a
regular basis
accept offers of help with day-to-day tasks and don't worry about the less important
things that can wait, so you can save your energy for the things you want to do
try to plan your activities, for instance arrange important things for when you have
more energy
●
make time to see friends and take part in normal social activities
●
most importantly, make time for you.
Coping with hair loss
It is important to remember that most likely you will have a full head of hair again
around 6 months after your treatment has finished. In the meantime the following
may help. Think about whether you might want to get a wig and discuss this with
your hospital team. They can put you in touch with a wig technician but if you want to
match your normal hair this needs to happen quickly. You may prefer to try hats and
scarves to cover your head. Using make-up, jewellery and other accessories can also
give you more confidence.
When you do start to lose your hair it may be easier if you have already had your hair
cut short. Wearing a hairnet or towelling turban to bed can also help to collect any hair
you lose overnight.
Dealing with your emotions
Dealing with a diagnosis of lymphoma and coping with chemotherapy is bound to take
its toll on you (and your family) emotionally. Try to allow yourself the space and time
you need to deal with this.
Try not to keep your worries to yourself. Writing letters or emails, seeing a counsellor
or complementary therapist, or joining a support group can all help you feel less
isolated and more supported. You might like to see what people are saying on our
website forums too. Getting some outside support can be vital even if you have family
around. Our helpline staff will always be happy to talk about anything that is worrying
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you. They might also be able to put you in touch with someone who has had similar
experiences to your own.
It won’t be at all surprising if you feel low or depressed at some stage during your
treatment. If you do, don’t put a brave face on it or bottle it up, talk to someone instead –
your hospital team, your GP, a friend or relative, or one of our helpline team.
Looking after yourself
Your physical and mental reserves will be challenged by having lymphoma and treatment
with chemotherapy. One of the most important things is not to expect too much of
yourself at this time. Let other people take care of you: accept offers of help and don’t be
afraid to ask people – they will probably be only too happy to help.
Some people find it helps to keep a diary during their treatment. This can help you to see
the progress you’re making, even if slowly, towards your goal. Being realistic about those
goals is also important – you need to take things in small steps. If you’re somebody who
finds goal-setting just adds to your stress then it is equally fine to just take each day as it
comes. You should do whatever works best for you, but bear in mind everybody has good
and bad days on chemotherapy.
Some common questions
Can I carry on working?
Some people are able to carry on with their work during chemotherapy and may find it a
helpful distraction. For many people this isn’t an option because they have a high risk of
infection or a physically demanding job. Try not to push yourself too hard, let your energy
levels guide you as to what you can do. If you do go to work, make sure your colleagues
understand that you may feel tired at times and that you need to avoid infections. Ask for
advice if not being able to work is causing financial problems.
Can I see friends and family?
It is good to keep up your social life with family and friends during treatment whenever
you feel well enough. But be realistic: don’t let people put you under pressure to do more
than you want; allow yourself to rest before and afterwards. If you have a particular event
that you want to attend, such as a family wedding, talk to your doctors. It may be possible
to time your treatment so that you are at your best for the big day.
Can I have sex?
There is no reason why you should not have sex during treatment if you feel like it, but
you should use contraceptives. This is because treatments may damage sperm or eggs
and could be harmful to a developing baby. Condoms should be used for 5 days following
each treatment and you should also avoid oral sex during this time as there can be traces
of chemotherapy in body fluids. (Note that oral contraceptive tablets may be less effective
while you are on treatment, so do discuss this with your doctor or nurse.)
When can I get pregnant after my treatment?
Although chemotherapy may make you less fertile, it is not a good idea to start a
pregnancy while on chemotherapy or soon afterwards. Doctors generally advise that
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women with lymphoma do not become pregnant during their treatment and for some
time afterwards (many doctors recommend 2 years). Men with lymphoma should
usually avoid making their partner pregnant while they are receiving chemotherapy
and for at least 3 months afterwards. However, everybody's circumstances will be
different, so it is important to discuss such issues with your hospital team. This will
allow them to give specific advice on what they feel would be best for you.
A final note
There are lots of things you may be able to do to help yourself while you are having
chemotherapy. Most importantly, remember to think about yourself, ask for help and
don’t expect too much of yourself. Some days are better than others – enjoy them
when they come along.
Acknowledgement
We are grateful to Professor David Cunningham, Dr Eliza Hawkes and Lucy Whiteman
for their assistance in reviewing this article. Professor Cunningham is consultant
medical oncologist, Dr Hawkes is clinical research fellow and Lucy Whiteman is
haematology specialist nurse at The Royal Marsden NHS Trust.
Useful sources of further information about chemotherapy
Macmillan Cancer Support
89 Albert Embankment
London SE1 7UQ
0808 808 00 00 (Monday–Friday, 9am–8pm)
Order line for booklets 0800 500 800

via website
www.macmillan.org.uk
CancerHelp UK
The patient information section of Cancer Research UK
0808 800 4040 (Monday–Friday, 9am–5pm)

via website
www.cancerresearchuk.org
Leukaemia & Lymphoma Research
39-40 Eagle Street
London WC1R 4TH
020 7504 2200

[email protected]
www.leukaemialymphomaresearch.org.uk
NHS Choices
www.nhs.uk/conditions/chemotherapy/pages/definition.aspx
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References
Skeel RT, Khleif SN (eds). Handbook of Cancer Chemotherapy. 8th edition. 2011.
Lippincott Williams & Wilkins, Philadelphia.
Perry MC. The Chemotherapy Source Book. 4th edition. 2008. Lippincott Williams &
Wilkins, Philadelphia.
Grevelman EG, Breed WPM. Prevention of chemotherapy-induced hair loss by scalp
cooling. Annals of Oncology, 2005. 16: 352–358.
Chemotherapy regimens commonly used for lymphoma
Regimen
Drugs included
Generic name
Brand name
ABVD
Doxorubicin
Bleomycin
Vinblastine
Dacarbazine
Adriamycin®
CHOP
Cyclophosphamide
Doxorubicin (or hydroxydaunorubicin)
Vincristine
Prednisolone
CODOX-M
Cyclophosphamide
Vincristine
Doxorubicin
Methotrexate
Oncovin®
CVP
Cyclophosphamide
Vincristine
Prednisolone
ESHAP
Etoposide
Methylprednisolone
High-dose cytarabine (Ara-C)
Cisplatin
ICE
Ifosfamide
Carboplatin
Etoposide
IVAC
Ifosfamide
Etoposide (VP-16)
Cytarabine (Ara-C)
Oncovin®
Solu-Medrone®
Platinol®
With the exception of ABVD, all of these regimens may be given with rituximab
(MabThera®). In this case an R is placed before the name, eg R-CHOP.
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How we can help you
We provide:
●
a free helpline providing information and emotional support  0808 808 5555 (9am–6pm
Mondays–Thursdays; 9am–5pm Fridays) or  [email protected]
●
free information sheets and booklets about lymphoma
●
a website with forums – www.lymphomas.org.uk
●
●
the opportunity to be put in touch with others affected by lymphoma through our
buddy scheme
a nationwide network of lymphoma support groups.
How you can help us
We continually strive to improve our information resources for people affected by lymphoma
and we would be interested in any feedback you might have on this article. Please visit
www.lymphomas.org.uk/feedback or email [email protected]
if you have any comments. Alternatively please phone our helpline on 0808 808 5555.
We make every effort to ensure that the information we provide is accurate but it
should not be relied upon to reflect the current state of medical research, which is
constantly changing. If you are concerned about your health, you should consult
your doctor.
The Lymphoma Association cannot accept liability for any loss or damage resulting
from any inaccuracy in this information or third party information such as
information on websites which we link to. Please see
our website (www.lymphomas.org.uk) for more
information about how we produce our information.
© Lymphoma Association
PO Box 386, Aylesbury, Bucks, HP20 2GA
Registered charity no. 1068395
Produced 31.10.2012
Next revision due 31.10.2014
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