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JASCAP
FIGHTING CANCER – LIVING WITH IT

Kaposi's sarcoma
From the JASCAP booklet series

14 January 2009
Contents
General
 What is cancer?
 Types of cancer
 What is Kaposi's sarcoma?

Causes & diagnosis


 Causes
 Types
 Signs & symptoms
 Diagnosis

Treatment
 Treatment
 Anti-HIV drugs
 Surgery
 Chemotherapy
 Radiotherapy
 Immunotherapy

Living with cancer


 Living with Kaposi's sarcoma

Clinical trials
 Research - clinical trials

Resources & support


 JASCAP resources
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What is cancer?
The organs and tissues of the body are made up of tiny building blocks called cells.
Cancer is a disease of these cells.

Cells in different parts of the body may look and work differently but most reproduce
themselves in the same way. Cells are constantly becoming old and dying, and new
cells are produced to replace them. Normally, cells divide in an orderly and controlled
manner. If for some reason the process gets out of control, the cells carry on dividing,
developing into a lump which is called a tumour.

Tumours can be either benign or malignant. Cancer is the name given to a malignant
tumour. Doctors can tell if a tumour is benign or malignant by examining a small sample
of cells under a microscope. This is called a biopsy.

In a benign tumour the cells do not spread to other parts of the body and so are not
cancerous. However, if they continue to grow at the original site, they may cause a
problem by pressing on the surrounding organs.

A malignant tumour consists of cancer cells that have the ability to spread beyond the
original area. If the tumour is left untreated, it may spread into and destroy surrounding
tissue. Sometimes cells break away from the original (primary) cancer. They may spread
to other organs in the body through the bloodstream or lymphatic system.

The lymphatic system is part of the immune system - the body's natural defence against
infection and disease. It is a complex system made up of organs, such as bone marrow,
the thymus, the spleen, and lymph nodes. The lymph nodes (or glands) throughout the
body are connected by a network of tiny lymphatic ducts.

When the cancer cells reach a new area they may go on dividing and form a new
tumour. This is known as a secondary cancer or metastasis.

It is important to realise that cancer is not a single disease with a single type of
treatment. There are more than 200 different kinds of cancer, each with its own name
and treatment.
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Types of cancer
Carcinomas
The majority of cancers, about 85% (85 in a 100), are carcinomas. They start in the
epithelium, which is the covering (or lining) of organs and of the body (the skin). The
common forms of breast, lung, prostate and bowel cancer are all carcinomas.

Carcinomas are named after the type of epithelial cell that they started in and the part of
the body that is affected. There are four different types of epithelial cells:

 squamous cells - that line different parts of the body, such as the mouth, gullet
(oesophagus), and the airways
 adeno cells - form the lining of all the glands in the body and can be found in
organs such as the stomach, ovaries, kidneys and prostate
 transitional cells - are only found in the lining of the bladder and parts of the
urinary system
 basal cells - that are found in one of the layers of the skin.

A cancer that starts in squamous cells is called a squamous cell carcinoma. A cancer
that starts in glandular cells is called an adenocarcinoma. Cancers that start in
transitional cells are transitional cell carcinomas, and those that start in basal cells are
basal cell carcinomas.

Leukaemias and lymphomas


These occur in the tissues where white blood cells (which fight infection in the body) are
formed, i.e. the bone marrow and lymphatic system. Leukaemia and lymphoma are quite
rare and make up about 6.5% (6.5 in 100) of all cancers.

Sarcomas
Sarcomas are very rare. They are a group of cancers that form in the connective or
supportive tissues of the body such as muscle, bone and fatty tissue. They account for
less than 1% (1 in 100) of cancers.

Sarcomas are split into two main types:

 bone sarcomas - that are found in the bones


 soft tissue sarcomas - that develop in the other supportive tissues of the body.

Others forms of cancer


Brain tumours and other very rare forms of cancer make up the remainder of cancers.

What is Kaposi's sarcoma?


Although Kaposi's sarcoma (KS) is a type of cancer, it differs from other types of cancer
in the way it develops. Unlike most cancers, which start in one place and may then
spread to other parts of the body, KS can appear in several parts of the body at the
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same time. The most common site for KS is on the skin but it may also affect internal
organs, particularly the lymph nodes (part of your immune system), the lungs and parts
of the digestive system (the gut).

Causes of Kaposi's sarcoma


Most Kaposi's sarcoma is now believed to be caused by a virus called Human Herpes
Virus 8 (HHV8), which is also known as Kaposi’s Sarcoma-associated Herpes Virus
(KSHV). It can affect people with a weakened immune system, including people with HIV
(Human Immunodeficiency Virus) and Aids.

HHV8 is mainly spread through saliva, but can also be spread in blood and semen, or
from a mother to her unborn child. The virus can be passed on through sexual contact,
kissing, blood transfusions and organ transplantation.

Types of Kaposi's sarcoma


There are four main types of KS They are all more common in men than women.

Classic Kaposi's sarcoma


The first, called classic KS, develops without any weakened immunity, like many other
types of cancer. It is very uncommon and is usually only found in older men of
Mediterranean, Middle Eastern, or Jewish descent. This type of KS is usually only found
in the skin, particularly on the lower legs and feet.

As it is a slow-growing cancer, people with early stage classic KS may not need any
treatment.

Endemic or African Kaposi's sarcoma


The second type of KS, endemic or African KS, is found in parts of sub-Saharan Africa.
It develops more quickly than classic KS and can affect men, women and children of all
ages, although it is more common in men.

Aids-related Kaposi's sarcoma


The third type of KS, Aids-related KS, is the commonest of the four types, although it has
become less common as the treatment of HIV and Aids has improved. As HIV infection
develops, the immune system becomes weaker and the risk of developing KS increases.

Transplant-related Kaposi's sarcoma


The fourth type of KS usually occurs in people who have a weakened or damaged
immune system. People who have had organ transplants, such as a kidney transplant or
a bone marrow transplant from a donor, take medicines which suppress their immune
system. This is to reduce the risk of their body rejecting the donated organ. Although
rare, KS can occur in transplant patients who are taking these immunosuppressant
drugs. This type of KS may improve if the immunosuppressant drugs are reduced or
stopped.
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Signs and symptoms of Kaposi's sarcoma


Kaposi's sarcoma on the skin appears as a small, painless, flat area (lesion) or lump,
ranging in colour from brown or brown-red to reddish purple. The lesions or lumps can
develop quickly. Although there may be a single area at first, it is not uncommon for
more than one to appear. Any part of the skin, including the inside of the mouth, can be
affected. Often the lumps merge to form a larger tumour.

KS can also affect other parts of the body, most commonly the lymph nodes, the lungs
and the organs of the digestive system. The signs and symptoms of internal KS depend
on the area of the body that is affected. If the lymph nodes are affected, which is
common in Aids-related KS, there may be swelling in the limbs. This is known as
lymphoedema and is caused by the KS cells blocking the lymph nodes and disrupting
the normal circulation of lymph fluid around the body. Lymphoedema can be a
distressing and uncomfortable symptom, and while there is no actual 'cure' there are
ways to relieve it.

Our booklet on lymphoedema gives useful advice about reducing lymphoedema through
methods such as exercise and massage.

KS in the lungs commonly causes breathlessness, while a tumour in the digestive


system (gut) may cause nausea, vomiting, and bleeding.

How Kaposi's sarcoma is diagnosed


You may begin by seeing your GP, who will examine you and check your general health.
Your GP will arrange for you to have some tests. You may be referred to a hospital for
specialist advice and treatment.

If you already know you have HIV or Aids, you will probably begin by seeing your HIV
specialist.

At the hospital you will need to have blood tests and a full examination. Your whole body
will be checked, as the lesions can be found on any areas of the skin, including the
inside of the mouth, the palms of the hands, the scalp, and the soles of the feet.
Although your doctor may suspect that you have KS by simply looking at the lesions, a
biopsy is usually done to confirm the diagnosis.

 Biopsy
 Further tests
 Chest x-ray
 CT (computerised tomography) scan
 Endoscopy
 Colonoscopy
 Lung function tests
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Biopsy

This is generally a quick and simple procedure, which can often be done in an outpatient
department. Using a local anaesthetic to numb the area, the doctor removes a small
piece of the lesion or lump for examination under a microscope. The area may be sore
for a few days afterwards.

Further tests

If a diagnosis of KS is confirmed, further tests are usually done to see if there are any
signs of KS cells elsewhere in your body. These may include any of the following:

Chest x-ray

This may be done to check for signs of KS in your lungs and airways (bronchial
passages). As lung infections are common in people with Aids, it may be difficult in this
situation to tell whether changes on the x-ray are actually caused by KS. A CT scan may
be done to confirm the diagnosis.

CT (computerised tomography) scan

A CT scan takes a series of x-rays which builds up a three-dimensional picture of the


inside of the body. The scan is painless but takes from 10–30 minutes. It can help to
show whether there are any signs of KS in other parts of the body. It is particularly useful
for diagnosing KS in the lymph nodes.

CT scans use a small amount of radiation, which will be very unlikely to harm you and
will not harm anyone you come into contact with. You will be asked not to eat or drink for
at least four hours before the scan.

You may be given a drink or injection of a dye which allows particular areas to be seen
more clearly. For a few minutes, this may make you feel hot all over. If you are allergic to
iodine or have asthma you could have a more serious reaction to the injection, so it is
important to let your doctor know beforehand.

You will probably be able to go home as soon as the scan is over.

Endoscopy

This procedure enables the doctor to look inside the body, through a thin flexible tube
called an endoscope that is passed down your throat. The endoscope has a tiny camera
and a light on the end. If necessary, the doctor can take a small sample of the cells (a
biopsy) to be examined under a microscope.

A mild sedative helps you to relax during the test and a local anaesthetic will be sprayed
onto your throat to prevent any discomfort as the tube is passed down. The doctor or
nurse endoscopist can examine your windpipe, lungs (bronchoscopy), oesophagus and
stomach (gastroscopy) in this way, and check for any signs of KS.
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Colonoscopy

Another type of endoscopy is used to examine your large bowel (colon). This test is
called a colonoscopy. The bowel must be empty for this test so a careful diet must be
followed for a few days beforehand and you may be given laxatives to take. A bowel
wash-out is usually done just before the test. This involves a nurse gently passing a tube
into your back passage while you are lying on your left side. Water is then passed
through the tube. You will be asked to hold the liquid in your bowel for a few minutes
before you go to the toilet.

Just before the colonoscopy you may be given a mild sedative to help you to relax. Once
you are lying comfortably on your side the doctor or specialist nurse will gently pass a
flexible tube (called a colonoscope) into your back passage. The tube can easily pass
around the curves of the bowel, and the lining of most of the bowel can be examined. A
light and camera on the inside of the tube helps the doctor or nurse to see any abnormal
areas or swelling.

Most people are ready to go home a couple of hours after their test. It is a good idea to
arrange for someone to collect you from the hospital, as it is best not to drive for several
hours after a sedative.

Lung function tests

If tests show that your lungs have been affected you may have lung function tests to
check how well your lungs are working. You will be asked to blow into a machine so that
a series of measurements can be taken to show how well your lungs are working.

Treatment for Kaposi’s sarcoma


 Types of treatment
 How treatment is planned
 Giving your consent
 Second opinion

Types of treatment

Mild cases of Kaposi's sarcoma may not need to be treated. It may be possible to use skin-
camouflage to cover any skin lesions. However, if the lesions or lumps are causing
embarrassment and distress, treatment may be recommended.

Your doctor is more likely to suggest that you have treatment if your KS is affecting internal
organs, or if there are many skin lesions. If you have HIV that is not very well controlled, your
specialist may also recommend that you start anti-HIV treatment.

The type of treatment used will depend on a number of different factors, including the size and
position of the tumours and your general health.
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 Classic KS does not usually require any treatment, although radiotherapy is sometimes
used for larger or easily visible lesions.
 Endemic or African KS is often treated with chemotherapy.
 Treatment of Aids-related KS is often affected by the person's general health. As the
immune system has already been weakened by the illness, extra care has to be taken to
ensure that any side effects of treatment are not going to make your health become
worse. For most people with Aids-related KS the treatment will include highly active
antiretroviral therapy (HAART) which reduces the level of the HIV virus in the body and
improves immunity.
 Transplant-related KS, caused by immunosuppressant drugs, can sometimes be
controlled by stopping or reducing these drugs.

If you have any questions about your treatment, don't be afraid to ask your doctor or the nurse
looking after you. It often helps to make a list of questions for your doctor and to take a close
friend or relative with you to your appointment.

How treatment is planned

In most hospitals a team of specialists will decide the treatment that is best for you. This
multidisciplinary team (MDT) will often include:

 a virologist – a doctor that specialises in treating people with viruses


 oncologists – doctors who have experience treating KS using chemotherapy and
radiotherapy
 specialist nurses who give information and support
 radiologists who help to analyse x-rays
 an HIV specialist.

The MDT may also include a number of other healthcare professionals, such as a:

 dietitian
 physiotherapist
 occupational therapist
 psychologist or counsellor.

Together they will be able to advise you on the best course of action and plan your treatment
taking into account a number of factors. These include your age, general health, and the size and
position of the tumours.

Remember to ask questions about any aspects that you do not understand or feel worried about.
You may find it helpful to discuss the benefits and disadvantages of each option with your doctor,
specialist nurse, or with the nurses on our cancer information and support service.

Giving your consent

Before you have any treatment, your doctor will explain the aims of the treatment to you. They will
usually ask you to sign a form saying that you give your permission (consent) for the hospital staff
to give you the treatment. No medical treatment can be given without your consent, and before
you are asked to sign the form you should have been given full information about:

 the type and extent of the treatment you are advised to have
 the advantages and disadvantages of the treatment
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 any possible other treatments that may be available


 any significant risks or side effects of the treatment.

If you do not understand what you have been told, let the staff know straight away so that they
can explain again. Some cancer treatments are complex, so it is not unusual for people to need
repeated explanations.

It is often a good idea to have a friend or relative with you when the treatment is explained, to
help you remember the discussion more fully. You may also find it useful to write down a list of
questions before you go to your appointment.

People often feel that the hospital staff are too busy to answer their questions, but it is important
for you to be aware of how the treatment is likely to affect you. The staff should be willing to make
time for you to ask questions.

You can always ask for more time to decide about the treatment if you feel that you can’t make a
decision when it is first explained to you.

You are also free to choose not to have the treatment. The staff can explain what may happen if
you do not have it. It is important to tell a doctor, or the nurse in charge, so that they can record
your decision in your medical notes. You do not have to give a reason for not wanting to have
treatment, but it can be helpful to let the staff know your concerns so that they can give you the
best advice.

Second opinion

Usually a number of cancer specialists work together as a team and they use national treatment
guidelines to decide on the most suitable treatment for a patient. Even so, you may want to have
another medical opinion. Either your specialist, or your GP, will be willing to refer you to another
specialist for a second opinion, if you feel it will be helpful. The second opinion may cause a delay
in the start of your treatment, so you and your doctor need to be confident that it will give you
useful information.

If you decide to have a second opinion, it may be a good idea to take a friend or relative with you,
and have a list of questions ready, so that you can make sure your concerns are covered during
the discussion.

Anti-HIV drugs
Most people with Aids-related Kaposi's sarcoma will be offered treatment with anti-HIV
drugs (antiretroviral therapy). A combination of some of the antiretroviral drugs (usually
three or more) will usually be used. To be effective, antiretroviral drugs need to be taken
every day, often for the rest of your life. Your doctor will discuss the benefits and
possible side effects with you if they are appropriate in your situation.

These drugs can stop the HIV virus from multiplying inside the cells that it has affected,
and can stop the virus from infecting other cells. This reduces the amount of HIV in the
body and limits the damage that the virus can do to the immune system. In many cases,
antiretroviral therapy alone can control KS, although this may take many months.
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There are different types of anti-HIV drugs. Commonly used types are:

 Nucleoside reverse transcriptase inhibitors (NRTIs) such as abacavir (ABC),


didanosine (ddI), emtricitabine lamiduvine (3TC), stavudine (d4T), and
zidovuvine (AZT)
 Nucleotide reverse transcriptase inhibitors (NtRTIs) such as tenofovir (TFV)
 Protease inhibitors (PIs) such as amprenavir, atazanavir, indinavir, lopinavir,
nelfinavir, ritonavir, and saquinavir
 Non-nucleoside reverse transcriptase inhibitors (NNRTIs) such as efavirenz
and nevirapine
 Other antiretrovirals such as enfuvirtide.

You can get more information about anti-HIV treatment from some of the specialist HIV
and Aids organisations.

Treating Kaposi's sarcoma with surgery


Surgery may be used to remove Kaposi's sarcoma from the skin, particularly when the
lesions are small. This is a simple procedure and may be done in the outpatient clinic or
day ward. The doctor injects local anaesthetic into the skin around the lesions to numb
the area. The lesions are removed and the wound stitched. This will leave a small scar
which gradually fades.

Some KS lesions can be removed using cryotherapy, which freezes the area to destroy
the cancer cells. Sometimes, a laser may be used to burn away the lesion. Your doctor
or specialist nurse can give you more information about these treatments, and whether
they are appropriate for you.

Treating Kaposi's sarcoma with chemotherapy


This is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. They work by
disrupting the growth of cancer cells. Commonly used chemotherapy drugs to treat
Kaposi's sarcoma are doxorubicin, vincristine (Oncovin®), bleomycin, etoposide
(Etopophos®, Vepesid®) and paclitaxel (Taxol).

 Chemotherapy for internal KS


 Chemotherapy for skin KS
 Liposomal chemotherapy
 Side effects

Chemotherapy for internal KS


The chemotherapy drugs are usually given by drip (infusion) into a vein in your arm
(intravenously), but some chemotherapy drugs can be taken as tablets (orally). They are
then carried around the body by the bloodstream. Chemotherapy for KS is usually given
every three weeks but may be given more frequently, depending on the drugs used.
Treatment is often given as an outpatient.
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Chemotherapy for skin KS


If the KS is only affecting the skin, it may be possible to use chemotherapy injected
directly into the skin lesion. This is known as intralesional chemotherapy and tends to
be used for smaller lesions (less than 0.5cm (¼ inch) wide). It can be a useful alternative
to radiotherapy for areas or skin types where radiotherapy might cause some darkening
of the skin, particularly on the face. Intralesional chemotherapy can also be used for
tumours inside the mouth.

For more extensive skin KS, chemotherapy is usually given as a drip into a vein.

Chemotherapy treatment can shrink the areas of Kaposi's sarcoma in the skin and make
them lighter in colour. In some people the lesions may almost disappear completely.

Liposomal chemotherapy
A different form of chemotherapy, called liposomal chemotherapy, is now often used to
treat KS. The molecules of the chemotherapy drugs are enclosed (encapsulated) in a
fat-based coating known as a liposome. Liposomes are able to travel to the tumour site,
where they release the drug. The advantage of this type of chemotherapy is that there
are fewer side effects, which means that treatment can be given over a longer period.

The liposomal chemotherapy drugs that are commonly used to treat KS are liposomal
daunoroubicin (Daunoxome®) and liposomal doxorubicin (Caelyx®, Myocet®). These
drugs are usually given as drips (infusions) every 2–3 weeks.

Our booklet on chemotherapy discusses the treatment and its side effects in more detail.
Information about individual drugs and their particular side effects are also available.

Side effects
Chemotherapy can cause unpleasant side effects. However, many people have few side
effects, and those that occur can often be well controlled with medicine. The main side
effects are described here, along with some of the ways they can be reduced.

Lowered resistance to infection The chemotherapy can reduce the production of white
blood cells by the bone marrow, making you more prone to infection. This is a common
side effect of chemotherapy and usually begins seven days after treatment has been
given. The number of white blood cells in your blood usually reaches its lowest point at
10–14 days after chemotherapy. Your blood cells will then increase steadily and will
usually have returned to normal before your next course of chemotherapy is due.

Contact your doctor or the hospital straightaway if:

 Your temperature goes above 38ºC (100.5ºF)


 You suddenly feel unwell (even with a normal temperature).
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You will have a blood test before having more chemotherapy, to make sure that your
cells have recovered. Occasionally it may be necessary to delay your treatment if your
blood count is still low.

Anaemia (low number of red blood cells) While having chemotherapy you may
become anaemic. This may make you feel tired and breathless.

Bruising or bleeding The chemotherapy can also reduce the production of platelets,
which help the blood to clot. Let your doctor know if you have any unexplained bruising
or bleeding, such as nosebleeds, blood spots or rashes on the skin, and bleeding gums.

Nausea and vomiting Some of the drugs used to treat KS may cause nausea (feeling
sick) and vomiting. There are now very effective anti-sickness drugs (anti-emetics) to
prevent or reduce nausea and vomiting. Your doctor will prescribe these for you.

Hair loss Unfortunately, some chemotherapy drugs can make your hair fall out. You can
ask your doctor if the drugs you are taking are likely to cause hair loss or other specific
side effects.

People who lose their hair often wear wigs, hats or bandannas. Some people are entitled
to a free wig from the NHS and your doctor or nurse will be able to give you more
details. If your hair falls out, it will grow back within 3–6 months, once your treatment is
over.

Sore mouth Some chemotherapy drugs can make your mouth sore and cause mouth
ulcers. Regular mouthwashes can help to keep your mouth clean and relieve any
soreness. Your nurse will show you how to use these properly. If you don’t feel like
eating during treatment, you could try a diet of soft food or replacing some meals with
nutritious drinks.

Skin reaction Intralessional chemotherapy may cause temporary inflammation of the


skin.

Tiredness You may feel tired and have a general feeling of weakness. It is important to
allow yourself plenty of time to rest.

Although they may be hard to bear at the time, these side effects will gradually
disappear once your treatment is over.

Chemotherapy affects people in different ways. Some people find they are able to lead a
fairly normal life during their treatment, but many find they become very tired and have to
take things much more slowly. Just do as much as you feel like and try not to overdo it.

Treating Kaposi's sarcoma with radiotherapy


Radiotherapy is a treatment which uses high-energy rays to destroy the Kaposi's
sarcoma cells while doing as little harm as possible to normal cells. The radiotherapy is
aimed at the skin lesions or internal tumours and is painless. Usually between one and
five doses are given.
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Positioning the radiotherapy machine

After radiotherapy to the skin, small lesions may fade completely but larger and deeper
lumps may become smaller and flatter, similar to a mole. Radiotherapy can be very
effective in reducing symptoms of internal KS, particularly swelling, pain and bleeding.

Side effects
Skin care Side effects of radiotherapy depend on the area of the body which is being
treated. Radiotherapy to the skin alone usually causes few side effects. Pale skin around
the treated area may become red, sore and itchy. People with darker skins may develop
a blue or black tinge in the treated area. Advice about skin care varies from one hospital
to another. Some will advise you not to wash the skin at all while you are having
radiotherapy. Others will advise you to use only tepid water on the area and to pat it dry
with a soft towel. Perfumed creams and lotions should be avoided and you should check
with the radiotherapy staff before applying anything to your skin.

If necessary, your doctor will prescribe a special cream to soothe the sore area. Avoid
exposing the treated area to the sun or extremes of hot or cold.

Hair loss Radiotherapy may make your hair fall out in the treated area. Hair in other
areas of the body is not affected. Your hair may grow back once your treatment is over,
but in some cases the hair loss may be permanent.

Feeling sick Radiotherapy to tumours in or near the digestive system can lead
to nausea and vomiting. Anti-sickness (anti-emetic) drugs can often help to overcome
this problem. It can also help if you avoid large meals and eat small amounts more often,
or supplement your diet with nutritious drinks, which you can buy at most chemists.

Hoarse voice Radiotherapy near the voice box (larynx) may cause hoarseness of the
voice. This is usually temporary and should begin to reduce once the treatment has
finished.

Tiredness You may feel very tired. It is important to get as much rest as possible,
especially if you are travelling a long way for treatment every day.
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Most side effects of radiotherapy disappear gradually once your course of treatment is
over, although some may continue for several months afterwards. If you have any
problems during your treatment, talk to the radiotherapy staff at the hospital, as they
have experience of looking after other people in the same situation as yourself.

Radiotherapy does not make you radioactive and it is perfectly safe for you to be with
other people, including children, throughout your treatment.

Treating Kaposi's sarcoma with immunotherapy


This type of treatment is occasionally used to treat Kaposi's sarcoma. It is often used
alongside other treatments such as anti-HIV therapies. Immunotherapy involves the use
of proteins normally produced by the body during viral infections such as flu. These anti-
viral proteins can also be produced in a laboratory.

Interferon
Interferon is the most common type of immunotherapy used to treat KS and is usually
given three times a week by injection under the skin. Alternatively, it may be injected into
the lesion. The needle is very small and fine so the injections are only slightly
uncomfortable. You will be taught how to give yourself these injections so you can do
them at home.

In the first week or two of treatment, interferon can cause side effects similar to those of
flu: especially chills, fever, headaches, tiredness and aching in the back, joints and
muscles. However, these soon disappear. Your doctor may recommend that you take
paracetamol about half an hour before your injection to prevent these side effects.

Living with Kaposi's sarcoma


Many people with slow-growing or early KS often find that physically they feel quite well,
but emotionally may find it difficult to cope. For some people the appearance of KS is the
first sign that they have Aids. In this situation, coming to terms with the diagnosis,
whether they knew about it beforehand or not, together with the constant physical
reminder of their illness, can be devastating.

It often helps to talk to someone who understands the special needs and problems of
people with Aids, their partners and families. A large number of organisations offer help
and support to people with Aids.

People affected by Kaposi's sarcoma in the skin may find this distressing. However,
there is a way to reduce the differences in skin colour and make the areas of KS less
noticeable.Camouflage make-up consists of specially designed creams, and the ranges
available are suitable for all skin types and colours, in both men and women. Some
clinical nurse specialists offer a camouflage make-up service with individual teaching
sessions on how to apply it for the best effect.

If KS has caused swelling of the limbs and lymph nodes (lymphoedema), you may have
hot, overstretched and painful skin in those areas. We have a booklet on lymphoedema.
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If you are finding it difficult to eat and are losing weight, it may be advisable to take
small, frequent, high-calorie, high-protein drinks which are available from chemists and
hospital dietitians. If cleaning your teeth is painful because of mouth lesions, try using a
soft toothbrush or foam stick.

Research - clinical trials for Kaposi's sarcoma


Cancer research trials are carried out to try to find new and better treatments for cancer.
Trials that are carried out on patients are known as clinical trials.

Clinical trials may be carried out to:

 test new treatments, such as new chemotherapy drugs, gene therapy or cancer
vaccines
 look at new combinations of existing treatments, or change the way they are
given, to make them more effective or to reduce side effects
 compare the effectiveness of drugs used for symptom control
 find out how cancer treatments work
 see which treatments are the most cost-effective.

Trials are the only reliable way to find out if a different operation, type of chemotherapy,
radiotherapy, or other treatment is better than what is already available.

Taking part in a trial


You may be asked to take part in a treatment research trial. There can be many benefits
in doing this. Trials help to improve knowledge about cancer and the development of
new treatments. You will also be carefully monitored during and after the study. Usually,
several hospitals around the country take part in these trials.

Some Kaposi's sarcoma research studies are giving chemotherapy before and during
radiotherapy as well as afterwards. Chemotherapy given at the same time as
radiotherapy is called concommitant chemotherapy. Research trials are trying to find out
how best to use this combination of treatments.

Photodynamic therapy (PDT) is being researched as a treatment for Aids-related


Kaposi's sarcoma. PDT involves an injection of a light-sensitive drug, which
concentrates in the KS lesion. A laser is then shone directly onto the lesion. The drug is
activated by the laser, and destroys the cancer cells.

Blood and tumour samples


Many blood samples and bone marrow or tumour biopsies may be taken to find out what
is wrong with you. Most of these are needed to make the right diagnosis. You may be
asked for your permission to use some of your samples for research into cancer. Some
samples may be frozen and stored for future use, when new research techniques
become available.

The research may be carried out at the hospital where you are treated, or it may be at
another hospital. This type of research takes a long time, so you are unlikely to hear the
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results. The samples will, however, be used to increase knowledge about the causes of
cancer and its treatment. This research will, hopefully, improve the outlook for future
patients.

JASCAP resources

 Talking about your cancer


Practical advice and guidance for cancer patients to help them communicate with family,
friends, carers and health professionals about emotional and practical issues arising
from a diagnosis of cancer and cancer treatment.

 Talking to children about cancer


Practical advice and guidance to help parents with cancer talk to their children about
their cancer.

 Talking to someone with cancer


Practical advice and guidance for friends, carers and family members to help them talk
to their friend or relative with cancer, and provide emotional and practical support.

Note: JASAP has booklets on esch of the above subjects