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LayoutHelpline open 9am-6pm Monday - Thursday,9am-5pm Friday Lymphoma AssociationPO Box 386, Aylesbury Bucks HP20 2GAAdministration: 01296 619400 Lymphoma Association ISBN 978-0-9555499-0-8 This edition is due to be revised in 2010 Registered Charity No. 1068395 All rights reserved. No part of this publication may be reproduced ortransmitted in any form or by any means, electronic or mechanical, includingphotocopying, or recording in any information storage or retrieval system withoutpermission in writing from the Lymphoma Association.
lymphatic cancers The Lymphoma Association provides: • freephone helpline • emotional support for those affected by lymphomas • information about lymphomas and their treatments • audio and video library • telephone links to others with similar experience of lymphoma • quarterly newsletter • network of support groups • national and regional patient conferences • Lymphoma Nurse Specialists Publisher: Lymphoma Association Author: Catriona Gilmour Hamilton The information in thisbooklet can be madeavailable in large print You may be someone withlow grade non-Hodgkin "the ‘monster' turned out lymphoma. Perhaps someone to be not as fearsome as close to you has recently I had imagined…" been diagnosed. You are notalone. Approximately 3000new cases of low grade non-Hodgkin lymphoma are diagnosedin the UK each year. Not many people have heard of the illnessbefore their own diagnosis.
Low grade non-Hodgkin lymphoma can occur at any stage inlife, but it is more common in those aged over 50. It is one ofthe most common cancers in those aged over 75.
Low grade non-Hodgkin lymphomas are a complex group ofcancers that are quite different from other, more aggressive,lymphomas. In many ways, having low grade lymphoma isdifferent to what you might expect of "having cancer". Thisbooklet aims to explain what low grade lymphomas are, howthey behave and what to expect of treatment.
It can be possible to enjoy good quality of life with low gradelymphoma for prolonged periods of time. We hope that thisbooklet helps you to face the challenge ahead.
The Lymphoma Association produces a separate booklet aboutliving with lymphoma, including information about feelings, diet,exercise and complementary therapies.
Should you require further information about anything youread in this booklet, or if there is anything you wish to discussin more detail, please call our helpline.
This booklet is a revision of a booklet first published in 2006.
We are grateful to Dr Christopher MacNamara, ConsultantHaematologist, Royal Free Hospital NHS Trust, for hisassistance in the revision of this booklet.
We would like to acknowledge the continued support of ourmany expert advisors, whose ongoing contributions help us inthe development of our publications.
In addition to our expert advisors, we have referred totextbooks and scientific papers in the compilation of thisbooklet. You will find these listed at the end of the booklet.
How to use this booklet Part One: Introduction to lymphomas The lymphatic system What are lymphomas? How do lymphomas develop? How will it affect my body? Cause of lymphoma? The symptoms of lymphoma What do the stages mean? Part Two: Low grade non-Hodgkin lymphomas What is meant by low grade or indolent? How will low grade lymphoma affect me? The low grade non-Hodgkin lymphomas26 Fol icular lymphoma Chronic lymphocytic leukaemia / smal lymphocyticlymphoma Marginal zone lymphomas MALT lymphoma Splenic marginal zone lymphoma Part Three:Treatment options for low gradenon-Hodgkin lymphoma Aims of treatment The treatment of early stage disease Watch and wait for advanced stage disease Treatments for advanced stage disease41 Combination chemotherapy + rituximab Combination chemotherapy on its own Purine analogues Rituximab on its own Rituximab maintenance therapy Oral chemotherapy High dose therapy and stem cel transplantation Clinical trials and the future Part Four: Practicalities of treatment About your hospital How is chemotherapy given? How is monoclonal antibody therapy given? How is radiotherapy given? Side effects of treatment62 Tips for coping with side effects What happens following treatment? Other useful organisations Selected references How to use this booklet
This booklet has been divided into four parts. You don't haveto read it all at once! You might like to read a bit at a time andcome back to it when you want to find out more.
Part One gives an introduction to lymphomas.
1 It deals with:
• What lymphomas are• The symptoms of lymphoma • How lymphoma is diagnosed • The tests you will have.
Part Two discusses the low grade non-Hodgkin
2 lymphomas in more detail.It deals with:
• How lymphomas are classified• How low grade non-Hodgkin lymphoma behaves• The different kinds of low grade non-Hodgkin lymphoma and how they affect you.
Part Three discusses the different treatments in use
for low grade non-Hodgkin lymphoma. It deals with:
• Treatment for early stage disease• Treatments for advanced disease.
Part Four discusses the practicalities of treatment.
4 It deals with:
• How chemotherapy is given• How antibody therapy is given• How radiotherapy is given• The side effects of treatment• Your hospital• Follow up after treatment.
You will see things written in different waysthroughout the booklet. This is what they mean: Words written like this discuss what is included in theparagraphs to follow The arrow bullet points give you directions toother parts of the booklet with more informationon a particular subject.
The helpline logo indicates that you can call ourhelpline for more information on this subject.
Words written in a paragraph like this are summaries of thesection above. You might want to just read these bits of thebooklet to get the most important points.
Introduction to lymphomas
This part of the booklet will begin with: The lymphatic system What lymphoma is and how lymphoma develops The cause of lymphoma The symptoms of lymphoma The lymphatic system
The lymphatic system is a complex network of tubes, glandsand other organs such as the spleen. The tubes are calledlymph vessels. The glands are called lymph nodes.
We have lymph nodes and lymph vessels throughout ourbodies. The lymph nodes are often found in groups, particularlyunder the arms, in the neck and in the groin.
The lymphatic system is part of the body's natural defenceagainst infection – the ‘immune system'.
The lymphatic system helps to transport cells and wasteproducts from place to place around your body. They arecarried in a clear fluid called lymph. The lymph moves throughthe lymph vessels and lymph nodes.
The lymph nodes are an important part of your immunesystem. Your lymph nodes ‘kick start' your body's defenceagainst infection.
The lymph carries white blood cells called lymphocytes.
Lymphocytes help our bodies to fight infection.
What are lymphomas?
Lymphomas are cancers of the lymphatic system.
Lymphomas develop when the white blood cells we mentionedbefore – the lymphocytes – become cancerous.
Lymphoma is not just one illness. It is a word used to describea wide range of diseases that all start with a cancerouslymphocyte. Lymphomas were first identified in the 19thcentury by Dr Thomas Hodgkin. Lymphomas are describedas either Hodgkin lymphoma (Hodgkin's disease), ornon-Hodgkin lymphoma.
Non-Hodgkin lymphomas can be fast growing (high grade or‘aggressive') or slow growing (low grade or ‘indolent').
Each year, about 10,000 people in the UK are diagnosed withnon-Hodgkin lymphoma. Around 3000 of these are low gradelymphomas. Non-hodgkin lymphoma is the 6th most commoncancer in the UK. It is slightly more common in men. It canoccur at any age, but it is more common in those aged 50and over.
How do lymphomas develop?
Lymphocytes are constantly dividing to make new lymphocytes.
Cell division and cell death are controlled by very complexchemical and genetic messages.
Lymphomas occur when something goes wrong with thismessaging system. Some of the lymphocytes start to divide inan abnormal way, or do not die when they should. Theseabnormal lymphocytes reproduce to make more abnormalcells, and collect to form lumps. Most commonly, these lumpsform in the lymph nodes. They can grow in other parts of thebody too.
How will it affect my body?
The abnormal lymphocytes can spread to other lymph nodes inall parts of the body. They can also spread to organs and tissuesoutside the lymphatic system and start to grow there too.
Like all cancers, lymphoma will damage the health of theindividual, and this will get worse if the illness is not treated.
The lymphoma cells take up energy and nutrients that areneeded by healthy cells.
Lymphoma cells are produced instead of the normal lymphocytes.
Lymphoma cells prevent healthy organs from doing their usualjob. This means that the person's health will suffer depending onwhere the lymphoma is. For example, lymphoma in the bonemarrow might mean that the body can't produce enough bloodcells. Tumours can press on surrounding tissues and organs too,causing discomfort and damage.
Cause of lymphoma?
The cause of lymphoma remains unknown.
There is no evidence to suggest that anything you have doneor not done has caused your lymphoma.
You can't catch lymphoma from someone and you can't giveit to someone else. You did not inherit the lymphoma fromyour parents.
Some people are more at risk of lymphoma because of othermedical conditions, in particular conditions that affect theimmune system. People who are on long-term drugs after anorgan transplant are more at risk of certain types of lymphoma.
Those living with HIV and AIDS are more at risk of developingsome types of lymphoma. This does not mean that you willdevelop HIV or AIDS if you have lymphoma.
Some kinds of lymphoma are related to common viruses.
Research studies have investigated possible causes oflymphoma, such as chemicals present in the workingenvironment. But it will be a long time before scientistsunderstand this subject properly.
The symptoms of lymphoma
There are many potential symptoms of lymphoma.
Low grade lymphoma often causes few symptoms. Many peoplehave no symptoms at all. For this reason, people often haveadvanced disease by the time they find out somethingis wrong.
The most common symptom of lymphoma is a painless lumpor swelling in the neck, armpit or groin. Sometimes there arelumps in more than one place. These lumps may come and gowith low grade non-Hodgkin lymphoma.
Other symptoms include: • Unusual tiredness or fatigue• Excessive sweating especially at night• Persistent flu-like symptoms• Fevers• Difficulty shaking off infections• Unexplained weight loss• Loss of appetite• Abdominal pain• A cough or breathlessness• A persistent itch all over.
Sometimes people can have lymphomas in other parts of thebody. A person's symptoms may vary depending on wheretheir lymphoma is.
The next section will discuss: How lymphoma is diagnosed The tests you will have The different stages of lymphoma Diagnosis means finding out what is wrong.
In most cases, it is not possible for a GP to confirm whether ornot you have lymphoma – not even from a blood test. For thisreason, your GP will refer you to a specialist at your localhospital for further tests. Sometimes you will see a number ofdifferent people who each specialise in different aspects ofyour care.
You will almost certainly have a biopsy. In most cases a biopsy
is the only way to tell whether or not a lump is lymphoma.
A biopsy means the removal of cells for close examinationunder a microscope. These cells can be taken from an enlargedlymph node. They can also be taken from other tissues such asthe bone marrow, or any tissue that seems to have somethingwrong with it.
Usually a whole enlarged lymph node will be removed.
This involves having a general anaesthetic and a short stay inhospital. Occasionally the cells will be taken using a needleand a local anaesthetic.
Often several doctors have a look at the biopsy. Other testsare performed on the cells. These tests give information aboutchanges in cell DNA, and proteins that can be found on the cellsurface. This information helps to determine what kind oflymphoma it is. These tests can take several days.
The diagnosis of non-Hodgkin lymphoma can be difficult.
Pathologists who work in General Hospitals may only see afew cases a year.
It is now recommended that suspected cases of non-Hodgkinlymphoma be reviewed in specialised laboratories. Expertpathologists will then check to make sure they agree with thediagnosis.
The next step is to find out whether other parts of the bodyare involved. This process is known as staging.
Staging involves a number of other tests, some of which aredescribed below. Don't worry if you don't have all of thesetests. Sometimes the most common tests are all that areneeded to find out about your lymphoma.
Most of these tests will be done as an outpatient. In otherwords, you will not have to remain in hospital overnight.
Blood tests will give your specialist information about your
Blood tests check things like your liver and kidney function.
Other blood tests give an indication of how your generalhealth might be affected by your lymphoma. For example, yourblood count gives information about the red cells, white cellsand platelets in your blood.
In some cases, your doctors may wish to test you for HIV.
This is because some cases of lymphoma are related to HIV.
You will have blood tests at regular intervals during yourtreatment and afterwards.
Bone Marrow Biopsy
The bone marrow is spongy, jelly-like tissue found in the
middle of the large bones in our bodies. The bone marrow
makes our blood cells.
It is common for lymphoma cells to be found in the bonemarrow. A bone marrow biopsy may be needed to see if thisis the case.
This procedure involves taking a sample of bone marrowthrough a large needle. The needle is usually inserted throughthe skin into the bone of your pelvis (your hip bone) using alocal anaesthetic. The procedure usually takes about 15 – 20minutes.
Although doctors use a local anaesthetic, this can be a painfulprocedure. You may need to take pain-killers before and afteryour bone marrow biopsy. Sedatives can help too. Ask yourspecialist for advice about what to take.
You may hear this test referred to as ‘bone marrow aspirate'or ‘bone marrow trephine'. Both are types of bone marrowbiopsy. A bone marrow trephine takes more tissue, whichgives your doctor more information about the structure of themarrow and the cells within it.
X-rays can be used to look at various parts of your body.
For example, a chest X-ray may be used to see if there are
any enlarged lymph nodes in your chest. X-rays are painless
and shouldn't take longer than a few minutes.
Scans give a more detailed picture of the body's internal organs
and lymph nodes.
A CT scan or CAT scan involves lying on a bench that moves
your body into a cylinder-shaped camera. The camera takes
computerised pictures of your insides. Unlike X-rays, whichgive a see-through picture from front to back, CT scans give apicture of your body in cross section from top to bottom.
As the bench moves, the camera takes pictures of the differentlayers of your body.
You may be asked not to eat or drink on the morning of thescan. Most people will be given a liquid to drink, or an injectioninto a vein, at the time of the scan. These are to make it easierto see some of your internal organs. The drink or injectionmight make you feel hot all over but this usually only lasts afew minutes. Tell someone if you feel this way.
If you are allergic to iodine, or if you have asthma, it isimportant that you tell the people doing the test before youhave the drink or injection.
The scan is painless, and takes 5 – 20 minutes. You will beasked to lie quite still while the pictures are being taken.
MRI (or NMR) scans are similar to CT scans, except they give
a slightly different image of the internal structures of your
body. MRI is particularly good at imaging certain tissues such as
the brain. Like having a CT scan, you are asked to lie on a table
that moves you into a cylinder. The cylinder measures
magnetic waves as they pass through your body. This test
takes about an hour and is painless, but can be very noisy and
you may feel claustrophobic.
Because the cylinder uses a magnet, you should take off allmetal jewellery beforehand. You should also let the techniciansknow if you have any other metal implants, such as a replacedhip or a pacemaker. Sometimes metal ‘staples' are used insteadof stitches after an operation, so mention this if you still havethem in after your biopsy.
PET scans give more detailed information about cell activity.
They measure the rate at which cells take up and process a
radioactive form of sugar. This can help doctors to distinguish
between cancerous and non-cancerous cells. More active cells,like cancer cells, will absorb the sugar more readily thansurrounding tissue. This creates energy that is picked up bythe camera.
You may hear this referred to as PET/CT. This is because newmachines combine a PET scan with a CT scan to give moreanatomical detail.
You will have an injection before the PET/CT scan. Thisinjection is the sugar that will create the pictures of your cells.
You will be asked to rest for up to an hour after this injection.
This is to give it time to be absorbed. PET/CT scans takeabout an hour.
PET/CT scans are not commonly used to diagnose lymphomaat the moment. They are more often used as part of follow upafter treatment. Doctors are continuing to find out moreabout how best to use PET scans in lymphoma treatment.
The NHS is working towards having a PET/CT scanner forevery cancer network in the UK. But at present, PET/CTscanning is not widely available.
An ultrasound scan may be used to check the inside of your
abdomen. This scan uses sound waves that bounce off internal
organs to create an image. You will be positioned on your
back, and a gel rubbed onto your stomach. A technician will
then pass an instrument over the gel to produce a picture on a
small screen. It is a painless procedure and takes about a
quarter of an hour.
What do the stages mean?
Once all the test results are ready, your doctor will be able totell which parts of your body are affected by your lymphoma.
This is called the stage of your disease. The different stagesare described in the following table.
One group of lymph nodes is affected on one side of the diaphragm Two or more groups of lymph nodes are affected on one side of the diaphragm Lymph nodes are affected on both sides of the Lymphoma can be found on both sides of the diaphragm and in organs outside the lymphaticsystem or in the bone marrow In addition to the stage, you may also hear the letters ‘A' or ‘B'used to describe your illness. This refers to whether or notyou've had significant weight loss, drenching night sweats orunexplained fevers.‘B' means that you have had one or moreof these symptoms and ‘A' means that you have not.
Most people with low grade lymphoma will have disease atstage 3 or 4 by the time they are diagnosed. This is becausethe disease grows slowly and it might be a long time beforeyou notice something is wrong.
These tests can take a couple of weeks to complete. This mightseem a long time, but the information being collected is veryimportant. Your doctor needs to know as much as possibleabout your illness before choosing the treatment that will bebest for you. It can be frustrating and worrying to have to waitbefore you find out more, and you may find this time difficult.
In the case of low grade lymphoma, it is not likely that yourillness will change significantly during the time it takes tocomplete your tests.
• Lymphomas are cancers of the lymphatic system. There are many different types of lymphoma.
• Lymphomas develop when a kind of white blood cell called a lymphocyte becomes malignant.
• Lymphomas are described as either Hodgkin lymphoma (Hodgkin's disease), or non-Hodgkin lymphoma. Non-Hodgkin lymphomas can be fast growing (high grade or‘aggressive') or slow growing (low grade, or ‘indolent').
• Lymphomas often cause very few symptoms. The most common symptom is a lump or swelling.
• Lymphomas are diagnosed following a biopsy of a lump, which means taking some of the cells to look at underthe microscope.
• After this, you will have lots of other tests to find out what parts of the body are involved. These include scansand blood tests, and sometimes bone marrow biopsy.
• The results of these tests will tell your specialist the ‘stage' of your illness.
Low grade non-Hodgkin lymphomas
This part of the booklet will discuss low grade non-Hodgkinlymphoma in more detail. The first section will discuss: Classification of lymphomas What is meant by ‘low grade' or ‘indolent' lymphoma How low grade lymphomas behave – relapse and remission There are many different types of lymphoma.
The process of classification means sorting all the differentlymphomas into particular groups. Your biopsy will help withthis process. Tests carried out on your lymphoma cells, whichtake a much more detailed look at the cell's properties, willalso help with classification.
Classification depends on: • what type of lymphocyte has become cancerous • what the cells and surrounding tissue looks like under • what molecules or proteins are on the cell • what changes may have happened to the cell genes, The classification of your lymphoma is very important. It givesyour specialist vital information about your illness, and how itmight behave, in particular: • whether it is growing quickly or slowly • whether particular parts of your body might be at risk • what treatment might be best for you.
T-cells and B-cells
Lymphocytes are either B-cells or T-cells. Low grade non-
Hodgkin lymphomas are either B-cell lymphomas or T-cell
lymphomas, depending on which lymphocyte has become
B-cells and T-cells are so called because they grow to maturityin different parts of the body. B-cells mature in the bonemarrow. T-cells mature in the thymus gland in your chest.
B-cells and T-cells act in different ways to protect our bodiesfrom infection and illness.
Most non-Hodgkin lymphomas come from B-cells. B-celllymphomas are about 10 times more common than T-celllymphomas.
What is meant by low grade or indolent?
Lymphomas are described as low grade if the cells appear tobe dividing slowly. Low grade non-Hodgkin lymphomas are alsocalled indolent lymphomas.
Generally speaking, the size of a cell gives an indication of itsgrowth rate. Most lymphomas are a mixture of small and largecells. Small cells reproduce more slowly than large cells. Thehigher the proportion of small cells the more slow growingthe disease is likely to be, and vice versa.
This rate of cell division will vary from person to person.
No two people are identical, even if on paper their lymphomasare the same.
The growth of low grade non-Hodgkin lymphoma canfluctuate. There will be times when the disease is more activethan others.
There are several different low grade lymphomas, which will bediscussed later in this section.
How will low grade lymphoma affect me?
The discussion below talks about the most common lowgrade non-Hodgkin lymphomas. Other kinds of low gradenon-Hodgkin lymphoma might behave differently. You might want to check this with your specialist. Early stage low grade non-Hodgkin lymphoma – stage 1or 2 – may have little impact on how you feel. This willdepend on which lymph nodes are affected, and what tissuesare nearby. Early stage disease usually causes few symptoms. Itis more likely to go away completely after treatment.
Advanced low grade non-Hodgkin lymphoma – stage 3 or 4 –is different. It is, in some ways, not what people expect ofhaving cancer. It often behaves like a long term condition.
There are times when it needs treatment, and times when itdoes not, but it is less likely to go away altogether. Doctorsdescribe this behaviour as a ‘relapsing and remitting course'.
What is meant by remission and relapse?
Remission is a term used to describe a disease being reduced
or eliminated completely. Doctors usually describe different
types of remission.
A complete remission is where no evidence of the diseaseis present.
A partial remission is where the disease has been significantlyreduced but not removed altogether. Sometimes doctors talkof ‘good partial remissions', or even ‘very good partialremissions' to describe degrees of response to treatment.
Relapse is the term used when a disease returns after anabsence or flares up after a quiet period.
What does this mean in practice?
Early stage low grade lymphoma – stage 1 or 2 – can
occasionally be cured. In this case there is a chance that the
treatment will remove the lymphoma completely – that the
person will go into complete remission – and that the
lymphoma will not return. Early stage low grade lymphoma is
Advanced low grade lymphoma – stage 3 or 4 – behavesdifferently. It may go into remission, but it is likely to relapseagain and need treatment at some time in the future. Peoplewith advanced low grade lymphoma are more likely to havepartial remissions than complete remissions. In other words, itmay reduce significantly following treatment, but is less likely togo away completely.
The intervals between treatments are likely to become shorterover time. Treatments that have worked for you in the pastmay not work as well next time round.
Because it does not tend to go away completely, and becauseit requires treatment at increasingly regular intervals,advanced low grade lymphoma is not usually considered to bea curable disease.
For these reasons, specialists aim to manage the disease ratherthan get rid of it completely. This can often be done verysuccessfully. The aim of treating advanced low grade lymphomais to induce the best possible remission for as long as possiblewith the least possible side effects. In other words, your specialist will aim to keep the disease under control with aminimum of disruption to quality of life and health.
It should be stressed that improvements in treatment meanthat cure of advanced low grade lymphoma is a realistic goalfor the longer term future. Recent additions to chemotherapymean that more people diagnosed today have a better chanceof good quality long term remission.
It is also important to point out that people with advanced lowgrade lymphoma often live for many years with the disease, andenjoy good quality of life.
What is meant by transformation?
Sometimes a person's lymphoma can change as it relapses.
Low grade lymphoma is usually a mixture of different cells,some that grow faster than others. Sometimes this mixturechanges, and the proportion of faster growing cells increases.
This means that the disease becomes more like a high gradelymphoma. This is known as transformation.
This change can occur in some places but not in others,meaning that a person might have some lumps that are lowgrade, and some lumps that are high grade.
If your doctor suspects that your lymphoma has changed, youmay need to have another biopsy.
In these cases the lymphoma will be treated as a high gradelymphoma, usually with combination chemotherapy asdescribed on pages 41 – 42.
• Classification of non-Hodgkin lymphoma depends on what kind of cell has become cancerous, thecharacteristics of that cell, and whether the lymphomagrows quickly or slowly.
• Low grade or indolent lymphomas grow more slowly.
• Early stage low grade non-Hodgkin lymphoma can be cured.
• Advanced low grade non-Hodgkin lymphoma is more difficult to cure completely. It tends to come and go,requiring treatment at regular intervals.
• The aim of treatment for advanced low grade non- Hodgkin lymphoma is to get as good a remission aspossible with the minimum impact on quality of life.
• Many people with advanced low grade non-Hodgkin lymphoma will live with the illness for a long time andenjoy good quality of life.
The low grade non-Hodgkin lymphomas
There are many different types of low grade non-Hodgkinlymphoma. They differ in the parts of the body involved, theway they are likely to affect you, and the way they are treated.
The following pages discuss some of the low grade lymphomas.
For each lymphoma you will find a table that discusses: What the term means How the illness might affect you How it might be treated Follicular lymphoma is the most common type of lowgrade lymphoma. It is likely that the discussion of follicular lymphoma will be relevant to you, but you should confirm this with your specialist.
We would like to stress that it may be confusing
or distressing to read about illnesses that are not
relevant to your situation.
The cells of follicular lymphoma have a characteristic appearance under the microscope.
Follicles – or clumps – of irregular size and shapereplace the normal structure of a lymph node.
Follicular lymphoma is the most common type oflow grade lymphoma. It is estimated that follicularlymphoma represents about 22% of all non-Hodgkin lymphomas.
Follicular lymphoma is more common in peopleaged over 50. Most people with follicularlymphoma are aged 65 and over. It is slightly morecommon in men.
Follicular lymphoma tends to grow slowly in most cases. It usually causes few symptoms in theearly stages.
The most common symptom is enlargement oflymph nodes, often in more than one place.
Sometimes the size of these lymph nodes willfluctuate.
Most people will have advanced disease beforesymptoms develop. About 80% – 85% of patientshave disease at stage 3 or 4 when they are firstseen by their doctor.
It is common for fol icular lymphoma to involve thespleen and bone marrow. This might cause problemswith your blood count. For example, you mayexperience anemia, or shortage of red blood cel s.
Follicular lymphoma tends to behave like a chroniccondition, meaning that there are times when it isactive and times when it is less active.
Many people live with follicular lymphoma for longperiods of time when it does not need treatment.
Treatment will be given when the disease worsensor when it causes problems for your general health.
It will usually need to be treated more than once.
Intervals between treatments tend to becomeshorter with time.
Most cases of follicular lymphoma will have amixture of small and large cells. The higher theproportion of small cells you have, the sloweryour disease is likely to grow. Sometimes follicularlymphoma will be graded from 1 – 3. The differentgrades refer to the proportions of small and largecells. Grade 3 tends to grow more quickly thanGrade 1 or 2.
In over 90% of people with follicular lymphoma,the cancer cells have a protein called ‘CD20' ontheir surface. This protein is very significantbecause it is commonly used as a target forimmunotherapy and radioimmunotherapy.
Follicular lymphoma may not need treatment You wil find For those that need treatment there are many more detail different options.
on pages37 – 46. Follicular lymphoma can be treated with differenttypes of chemotherapy, with antibody therapy andsometimes with radiotherapy.
Very occasionally more intensive treatments willbe used, including high dose therapy and stem celltransplantation. This is usually reserved for peoplewith disease that might be more aggressive.
Chronic lymphocytic leukaemia / small
You may be thinking that leukaemia and lymphoma are different For further things, and to a large extent you would be correct.
In theory, lymphoma is a disease primarily of the lymph nodes, and leukaemia is a disease that primarily affects the blood. In practice, the you may wish two are very similar and often almost impossible to distinguish from to contact one another. They are both diseases of blood cells with the tendency Cancerbackupto involve the same parts of the body.
or theLeukaemia Chronic lymphocytic leukaemia (CLL) and small lymphocytic lymphoma are terms used for the Fund. You wil same condition. Small lymphocytic lymphoma (SLL) find theirtends to be used when the lymph nodes are more details at theprominently involved.
end of thisbooklet. The words refer to the behaviour of the illness.
Chronic means something that is slow growingand tends not to go away completely. The namesalso refer to the kind of cells that are seen underthe microscope.
CLL/SLL is distinguished by particular formationsof cells in the bone marrow and lymph nodes.
CLL/SLL tends to affect people in later life. It ismore likely to occur in those aged over 60.
CLL/SLL is a slow growing illness. Many people live with it for a long time and die of something else.
People with CLL/SLL often have no symptoms at all.
The most common symptom of CLL/SLL isenlargement of the lymph nodes in lots of parts ofthe body.
Some people will experience ‘B' symptoms –unexplained weight loss, night sweats and fevers.
CLL/SLL commonly involves the bone marrow.
The cancerous cells can also be found in theblood. It often involves the liver and the spleen.
Disease in the bone marrow and the spleen cancause changes to your blood count. In otherwords, it alters the numbers of healthy blood cellsin your blood. You may have a shortage of redblood cells (anemia), or a shortage of platelets(thrombocytopenia).
Anemia causes fatigue, can cause aches and painsand can make you short of breath. People withanemia often look very pale.
Thrombocytopenia means that you are more likelyto have problems with bleeding.
Changes to your blood mean that, unlike otherlymphomas, CLL/SLL may be found following aroutine blood test, even if you have no symptoms.
You wil find In a minority of people CLL/SLL will change to become a faster growing disease.
People with CLL who feel well often need no more detail on pages37 – 46. Treatment for CLL involves chemotherapy andsometimes antibody therapies.
Some low grade non-Hodgkin lymphomas begin in, and may be
confined to the skin.
The Lymphoma These diseases are quite different to other lymphomas in the way they behave, how they affect you, and how they are treated.
Because they are so different to other low grade lymphomas, the sheet about cutaneous lymphomas are discussed in a separate document.
Please telephonethe helpline for ‘Lymphoplasmacytic' refers to the kind of cells that can be seen under the microscope. In thiscase you can see lymphocytes that look likeanother cell type – a plasma cell.
Lymphoplasmacytic lymphomas are a group ofsimilar illnesses that have a tendency to behave inparticular ways. They are also referred to aslymphoplasmacytoid lymphomas.
Waldenström's macroglobulinaemia (WM) is asubtype of lymphoplasmacytic lymphoma.
The term ‘macroglobulinaemia' refers to thepresence in the blood of a large abnormal proteinor ‘globulin'. This protein is produced by thecancerous cell.
Lymphoplasmacytic lymphoma is less likely to produce ‘typical' lymphoma symptoms such asweight loss, fevers and night sweats.
Lymphoplasmacytic lymphoma is similar to chroniclymphocytic leukaemia because cancerous cellscan sometimes be found in the blood.
It will always involve the bone marrow and ismore likely to involve the spleen.
Lymphoplasmacytic lymphoma can cause you tobecome anemic. This means a shortage of healthyred blood cells.
Anemia causes fatigue, can cause aches and painsand can make you short of breath. People withanemia often look very pale.
Lymphoplasmacytic lymphoma is likely to produceabnormal proteins or ‘globulins' that circulate inthe blood. In high concentrations these proteinscan cause problems due to ‘hyperviscosity'. Thismeans that the protein makes the blood too thick.
It makes it harder for the blood to get throughsmall blood vessels, and causes raised pressure inthe blood vessels. This may cause a variety ofsymptoms, including nose bleeds, confusion andvisual disturbance. In some cases it can causemore serious problems. Your specialist willcarefully monitor the levels of these proteins.
Lymphoplasmacytic lymphoma is treated in a number of different ways according to individualcircumstances.
In some cases it will need no treatment.
Other people may have treatment withchemotherapy and/or antibody therapy.
Marginal zone lymphomas
Marginal zone lymphoma refers to a group of lymphomas that make
up around 10% of all non-Hodgkin lymphomas.
They can grow in the lymph nodes, but they usually occur outside thelymphatic system.
The most common marginal zone lymphomas are MALT lymphomaand splenic lymphoma.
MALT lymphoma and splenic lymphoma are quite different from other lowgrade lymphomas in their behaviour and treatment. ‘MALT' stands for ‘mucosa-associated lymphoid tissue'. These are lymphomas that begin to growin the mucous membrane. The mucousmembrane is a moist soft tissue that lines manyparts of the body.
MALT lymphomas can occur at any age, but theytypically affect people of middle age and older.
They represent about 8% of all non-Hodgkinlymphomas. MALT lymphoma is more commonin women.
MALT lymphomas are more likely to occur inpeople who have had particular diseases. Forexample, MALT lymphomas of the stomach occurfollowing infection with a bacterium calledhelicobacter pylori. MALT lymphoma of thethyroid usually occurs in people who've had adisease called Hashimoto's thyroiditis. MALTlymphoma in other tissues is more common inpeople with Sjogren's syndrome.
The symptoms of MALT lymphoma will depend on what part of your body is affected.
MALT lymphoma can grow in a number of places,including the stomach, the thyroid gland, thesalivary gland, the lung, the tear glands and otherparts of the eye.
MALT lymphoma may be confined to the tissuewhere it first started to grow. In some cases itspreads further and may involve the lymph nodesor bone marrow.
The most common place for MALT lymphoma togrow is the stomach. People with MALTlymphoma in the stomach usually experiencesymptoms of indigestion or abdominal pain. It ismost often diagnosed following an endoscopy.
This is a procedure that involves putting aninstrument down the oesophagus and into thestomach to have a look and take a biopsy.
MALT lymphomas in other places will causelumps, inflammation, irritation and discomfort inthe area. MALT lymphoma in the lung may causecough and shortness of breath. MALT lymphomain the tear gland will make the eye very watery.
MALT lymphomas are less likely to cause the‘typical' symptoms of lymphoma such as weightloss, fevers and night sweats.
The treatment of MALT lymphoma will depend You wil find on the parts of the body involved.
In some cases MALT lymphoma may need no discussed in initial treatment.
more detailon pages It is thought that MALT lymphoma of the stomach 37 – 46. is caused by infection with a bacterium calledHelicobacter pylori. In its early stages it canrespond to treatment with antibiotics.
The antibiotics are used to treat the bacterialinfection and the lymphoma regresses as a result.
If the lymphoma doesn't respond to this type oftreatment, or if it has spread beyond the lining ofthe stomach at the time of diagnosis, severaltreatments may be used. These may includesurgery, chemotherapy and antibody therapy.
MALT lymphomas in other parts of the body willbe treated in different ways depending on where itis and whether or not it is confined to one area.
Possible treatments include surgery, chemotherapy,antibody therapy and radiotherapy.
Splenic marginal zone lymphoma
Splenic marginal zone lymphoma is so called because it usually begins in the spleen.
Sometimes doctors use the term ‘villouslymphocytes' when describing this type oflymphoma. This refers to particular cells that canbe found in the circulating blood.
Splenic lymphoma is more likely to occur inlater life.
Splenic lymphoma is usually a slow growing disease.
Enlargement of the spleen means that the spleendoes too much of what it is supposed to do. Ingood health, your spleen takes away excess bloodcells. If the spleen is diseased, it can take away toomany blood cells. This can mean that you have ashortage of blood cells, in particular a shortage ofred blood cells (anemia) or a shortage of platelets(thrombocytopenia).
Anemia causes fatigue, can cause aches and painsand can make you short of breath. People withanemia often look very pale.
Thrombocytopenia will make you more prone tobleeding problems.
Splenic lymphoma may be confined to the spleen.
It can also spread beyond the spleen to involveother tissues, in particular the bone marrow andlymph nodes.
Splenic lymphoma may be treated in several ways, including chemotherapy, surgery and antibodytherapy.
Some people may require no treatment forprolonged periods.
For a discussion of Waldenström's macroglobulinaemia see
lymphoplasmacytic lymphomas on page 30 – 31.
Treatment options for low grade
This part of the booklet will discuss the different treatmentsused for low grade non-Hodgkin lymphoma.
Aims of treatment The treatment of early stage disease The treatments for advanced disease Clinical trials and the future Aims of treatment
The aim of treating low grade non-Hodgkin lymphoma is toachieve a good quality prolonged remission with good qualityof life.
Some people with stage 1 or 2 low grade non-Hodgkinlymphoma have a chance of going into a permanent completeremission. For these people, the aim of treating early stagedisease will be to cure it.
For most people with stage 3 or 4 low grade non-Hodgkinlymphoma the aim of treatment will be to control the disease.
Advanced disease has a higher tendency to relapse, and isdifficult to cure completely. This means that you are likely toneed treatment at regular intervals.
Until now, doctors have treated advanced low grade non-Hodgkin lymphoma as a chronic condition. But there is reasonto expect that this situation is changing. Recent importantdevelopments in treatment mean the chance of better quality remissions, and remissions that last longer. With time, theremay be evidence to suggest that people are living longer as aresult. Many experts are confident that in the future advancedlow grade lymphoma may be regarded as a potentially curablecancer.
The treatment of early stage disease
Between 15% and 20% of people with low grade lymphomahave disease at Stage 1 or 2 at the time they first see theirdoctor. This means that, after completing all of the normaltests, the disease can only be found in one or two groups oflymph nodes.
The standard treatment for people who have early stagedisease is radiotherapy to the affected lymph nodes and to thesurrounding groups of nodes.
Surgery to remove all the lymph nodes in the area is not thebest treatment. Some lymphoma cells will be left behind aftersurgery and this means the lymphoma has a good chance ofcoming back.
If the disease comes back at some point in the future it willthen be treated in the same way as advanced stage disease.
Some doctors suggest that people with early stage diseasemight benefit from adding short course chemotherapy, orantibody therapies to radiotherapy. Clinical trials will beneeded to provide more information about this.
Watch and wait for advanced stage disease
Many people who have stage 3 – 4 low grade non-Hodgkinlymphoma do not require immediate treatment. Treatmentmay not be necessary if you: • are well• have no ‘B' symptoms • have small lymph nodes which are not obviously enlarging rapidly • have no threat to major organ function, including bone marrow function.
If this applies to you, your doctor might recommend ‘watch andwait'. This means exactly what it says. You will be watched,meaning regular outpatient appointments to check on yourillness and how you are feeling. You and your specialist will waituntil your illness changes before considering treatment.
You will be encouraged to keep your specialist informed of anychange in how you are feeling. Appointments can be changed ifyou feel the need to see your doctor sooner.
In a scientific study,‘watch and wait' has been compared withimmediate treatment with chemotherapy. The people nottreated initially did just as well as those who had intensivechemotherapy. They were also spared the side effects ofchemotherapy.
For people who are suitable for a ‘watch and wait' policy theaverage time from diagnosis to starting treatment is about 18months. However, some people can carry on for many yearswithout needing any treatment.
If you would liketo talk about It can be difficult to have a cancer that is not having active ‘watch and wait' treatment. Many people find it hard to understand why no please telephone treatment is the best thing to do. It doesn't mean that you are our helpline. too old, or that your disease is too advanced to treat. It meansthat it might be best to save yourself the side effects oftreatment until the illness becomes worse. Evidence suggeststhat no treatment is just as good as treatment for people whoare otherwise feeling well.
It is important to be aware that this advice may change.
Current clinical trials may provide information that will changethe treatment of people with no symptoms. You will findcurrent research referred to on page 46 – 48.
Treatments for advanced stage disease
Your specialist will recommend starting treatment when: • your lymph nodes begin to enlarge• you develop ‘B' symptoms or begin to feel more unwell• tests show that your major organs or bone marrow are affected.
It is likely that you will need treatment more than once,and that you will experience different types of treatmentover a period of time. The average time between treatmentsis 2 – 3 years.
There are several treatments in routine use for advanced lowgrade lymphoma. These are discussed on the following pages.
There are a number of things that will be considered whendeciding which of these treatments will be best for you: 1. What kind of lymphoma you have. Some lymphomas
respond better to certain kinds of treatment than others.
Some treatments are not suitable for all lymphomas.
2. Whether you have been treated before. Certain
treatments are recommended for those who are havingtreatment for the first time. Others are suitable for peoplewho are having a second or third course of treatment.
3. Side effects. Side effects of treatment may play a major role
in deciding what treatment is best for you. This is particularlythe case for those in later life who may have other healthproblems. Your specialists will need to ensure that you willbe able to tolerate the side effects, and to ensure that yourtreatment does not do more harm than good.
4. Previous treatment. If you have failed to respond to a
treatment previously, or if it had a very short-lived response,a different form of treatment is likely to be used next time.
5. Need for a rapid response. If there are severe symptoms,
or evidence of problems with a major organ, it is importantto ensure that the disease responds quickly to treatment.
Some therapies produce a more rapid response than others.
6. Convenience. The frequency of hospital visits, need for
admission, and total duration of treatment will be importantfactors when making a treatment choice.
Combination chemotherapy + rituximab
Rituximab in addition to combination chemotherapy is
recommended as standard first treatment for people with
B-cell low grade non-Hodgkin lymphoma who have not been
Recent research has demonstrated that the addition ofrituximab to combination chemotherapy is superior tochemotherapy alone. It means a better response to treatmentand, for some people, an improvement in overall survival.
This may be recommended for you if you are eligible. Eligiblemeans that: • you have advanced B-cell follicular lymphoma• your lymphoma produces the protein CD20• you are fit enough to cope with the side effects of combination intravenous chemotherapy.
Combination chemotherapy means giving several drugstogether. The idea is to expose the lymphoma cells to anumber of drugs that each act in different ways. The drugsare given as a combination of tablets and drugs giventhrough a drip, or as an injection into a tube in your vein.
Combination chemotherapy does not usually involve staying inhospital. You usually visit the hospital for a few hours on eachday of the treatment. In some cases, admission to hospitalmay be necessary.
Rituximab is a monoclonal antibody therapy. A monoclonalantibody is a protein made to target something called an antigen that is found on a cell surface. Rituximab targets anantigen called CD20. CD20 is found on the surface ofB-lymphocytes, including the cancerous cells of a B-celllymphoma. The antibody attaches itself to the antigen. Thishelps the cell to die, and helps your immune system to attackit. Rituximab is different to chemotherapy because it targetsonly one kind of cell. This means that there is no damage toother healthy cells.
Rituximab is most often given with a combination of drugscalled CVP (R-CVP). CVP uses the drugs cyclophosphomide,vincristine, and prednisolone. This combination is given asintravenous injections and tablets, at three or four weekintervals. A full course of treatment is usually 6 to 8 cycles,meaning treatment over a period of about 6 to 8 months.
Doctors also use rituximab in combination with CHOPchemotherapy (R-CHOP). CHOP uses the drugscyclophosphamide, hydroxydaunorubicin (or doxorubicin),oncovin (or vincristine) and prednisolone. This combination isalso given as intravenous injections plus tablets, usually at threeweek intervals for a total of 6 to 8 cycles. The addition of thedrug hydroxydaunorubicin means that CHOP has more sideeffects than CVP. R-CHOP is not suitable for everyone.
Rituximab can also be added to other combinations ofchemotherapy. R-CVP and R-CHOP are those mostcommonly used.
Combination chemotherapy on its own
Sometimes combination chemotherapy is used on its own.
CHOP and CVP are both used for low grade lymphoma.
There are a number of other combinations in regular use.
The chemotherapy you have will depend on the kind oflymphoma you have, and on how you have responded toprevious treatments.
Some intravenous chemotherapy combinations are based on
particular types of drugs called purine analogues. This group
of chemotherapy drugs includes fludarabine and cladribine.
Most experience in treating low grade lymphoma has been
with fludarabine. It is common in the treatment of chronic
Fludarabine can be given as an intravenous injection or in tabletform. It is usually given as daily injections or tablets for 3 to 5consecutive days, once every 3 to 4 weeks. A standard courseis 6 to 8 cycles of therapy.
Fludarabine is often used in combination with other drugs, suchas in FMD chemotherapy (fludarabine, mitoxantrone,dexamethasone) or FCM (fludarabine, cyclophosphamide,mitoxantrone). Doctors are investigating the use of fludarabineand its combinations with rituximab.
Rituximab on its own
Rituximab can be used on its own for people who have relapsed
more than once following chemotherapy, or for people whose
lymphoma does not respond to chemotherapy. It can also be
used for people who are unable to cope with the toxic side
effects of chemotherapy because of other health problems.
Rituximab maintenance therapy
Rituximab is given as a maintenance treatment after
chemotherapy to people who go into remission. Research
confirms that using rituximab in this way helps to significantly
prolong remission, meaning that people can enjoy longer
periods of improved quality of life.
Rituximab maintenance might be suitable for you if: • you have stage III – IV B-cell follicular lymphoma• you have relapsed following an earlier course of treatment• you go into remission following another course of chemotherapy or R-chemotherapy.
Maintenance rituximab is given once every 3 months. At themoment, it is given for a maximum period of 2 years.
Current clinical trials will provide evidence about whetherrituximab should be given to maintain remission following yourfirst course of treatment.
Oral chemotherapy – chemotherapy taken as a tablet – has
always been a common treatment for low grade lymphoma.
The side effects of tablet chemotherapy are often relatively
easy to tolerate. This makes tablet chemotherapy a good
option for anyone who is not fit enough to cope with
intravenous combination chemotherapy.
The most frequently used tablet is a drug called chlorambucil.
It is taken every day for two weeks, followed by two weeks off,and then repeated. A full course of treatment is usually about6 months, but may sometimes be longer.
Another drug called cyclophosphamide is sometimes used in asimilar way to chlorambucil.
Radioimmunotherapy is a combination of antibody therapy and
The Lymphoma A tiny radioactive particle is attached to an antibody that targets Associationan antigen on the B-lymphocyte. The action of the antibody – produces a which helps the cell to die – is combined with the delivery of a information sheet dose of radiation direct to the lymphoma cell.
Radioimmunotherapy is different from conventional Please telephone chemotherapy or radiotherapy, because it targets the B- the helpline for lymphocyte in particular, and avoids damage to healthy cells.
Zevalin® is one radiolabelled antibody that is being used in anumber of UK hospitals. Another drug name is Bexxar®.
Recent research suggests that radioimmunotherapy mightprolong remission when given after a course of chemotherapy.
Radioimmunotherapy may also be used for people who haverelapsed following earlier treatments with chemotherapy andrituximab, or for people whose lymphoma does not respondto other treatments.
At present, radioimmunotherapy is not widely used in NHShospitals.
The word ‘steroid' refers to a large family of similar drugs.
They are all drugs that imitate hormones produced naturally
by the body.
Steroids may be given with chemotherapy or on their own.
The most commonly used steroid is called prednisolone. Steroidscan be taken as tablets or sometimes given intravenously.
Steroids are not a long-term treatment for lymphoma, but theyare very effective in controlling symptoms, and reducing thedisease quickly.
Steroids are useful for people who are not well enough forchemotherapy, or for use in symptom control.
High dose therapy and stem cell transplantation
Occasionally, some specialists recommend treatment with high
dose therapy and stem cell transplantation as a first treatment
or as a treatment to follow standard chemotherapy. It is
thought that the high dose therapy may produce a good quality
Stem cell transplants mean that chemotherapy can be given inhigher doses than usual. Treatment for lymphoma causesdamage to the cells of your bone marrow, which makes thecells of the blood. The large doses of chemotherapy kill all thecells of your bone marrow, so your bone marrow needs helpto recover.
Your bone marrow recovers with a transfusion, or a ‘transplant',of cells. These cells are called stem cells. They are the primitive cells that have the potential to grow into all the different cellsof your body. Following the transplant, they find their way backto your bone marrow, and replace the damaged cells.
The long-term effect of high dose therapy for low grade non-Hodgkin lymphoma is still unclear. It is not a treatment thateveryone can tolerate because of the high doses of drugs andthe pronounced side effects.
Doctors are still learning about how best to use stem celltransplant in low grade lymphoma. To date, stem cell transplanthas not been compared with other treatments that aim toprolong remission.
Clinical trials and the future
Clinical trials are scientific studies that test the success ofdifferent treatments. They are very important in improving thefuture treatment of people with lymphoma. You may be invited The Lymphoma to take part in one. Not all hospitals conduct clinical trials.
Association can This may be something to discuss with your doctor when provide more planning treatment.
informationabout stem cel Clinical trials for lymphoma usually involve comparing a standard treatment with another, newer, type of treatment. In these cases, you are allocated to one of two groups at random. You will not transplants and be able to choose which of the treatments you receive.
Please telephone Sometimes trials for low grade non-Hodgkin lymphoma involve our helpline. the use of a less well known treatment on its own. These trialsare for people who have already had other standard treatments.
If you take part in a trial, you will be given information aboutthe reasons for the trial and the drugs you will have.
Clinical trials often involve more tests and scans. Peopleinvolved in trials also have access to specialist research staff forinformation during treatment and afterwards.
There will be no pressure placed on you to take part in a trialif you do not wish to. You can always opt to have the standardtreatment if you prefer. Your care will not be compromised ifyou don't want to be in a trial.
The past decade has seen huge changes in the treatment ofadvanced low grade non-Hodgkin lymphoma. All of thisprogress is the result of clinical trials. The following areexamples of current areas of research.
More about rituximab
Research continues to improve the way we use the treatments
we already know about. This includes looking at the use of
rituximab. Some important areas of study that could mean
further progress in the near future include:
• should rituximab therapy be used instead of watch • should rituximab maintenance therapy be used after someone's first course of treatment? • should rituximab maintenance be given for longer than 2 years? Is it safe to continue for longer than 2 years? Donor transplants
Donor stem cell transplants may prove to be an important
treatment for people with low grade lymphoma. By using ‘reduced
intensity conditioning' – meaning lower doses of chemotherapy
and radiotherapy – donor transplants may be safer for older
people for whom high dose therapy would be too risky.
The cells from a donor are like giving you a transplant of a newimmune system. These new immune cells will mount an attackagainst your lymphoma cells. This is known as the ‘graft versuslymphoma effect'.
Donor transplants are usually only used for people who haverelapsed following other treatments.
Following the success of rituximab, new monoclonal antibodies
are in development to target other antigens on the surface of
the lymphoma cell. Early clinical trials are looking at whether
they work, and how they might be combined with other
treatments. These include:
• anti CD80 therapy galiximab• anti CD22 Epratuzumab• anti CD40 SGN-40 Vaccination therapy
In recent years, research has increased our understanding of how
our immune systems react – or don't react – to cancer cells.
Lymphoma cells have certain unique proteins or ‘antigens' that
are found on the cell surface. For some reason, the immune
system sometimes fails to respond to the presence of these
antigens. It is thought that, using the antigen, a vaccine might be
prepared. The vaccine would help the immune system identify
the lymphoma cells, and kill them. In this way, it may be possible
to prevent spread of disease or relapse. Vaccination therapy has
been under investigation for several years.
Vaccines are not currently available for routine use inlymphoma therapy.
• Early stage low grade lymphoma is potentially curable with radiotherapy to the affected lymph nodes. If it comes back itwill then be treated as for advanced low grade lymphoma.
• If you feel well, and there is no immediate threat to your general health, your disease may need no treatment tobegin with. Your specialist will observe you and begintreatment when necessary. This is called ‘watch and wait'.
• Treatment wil be recommended if your lumps enlarge quickly, if your symptoms become difficult to manage, or ifthere is a threat to a major organ such as your bone marrow.
• You are likely to need more than one course of treatment, and you are likely to experience different kindsof treatment.
• There are many potential treatments for advanced low grade non-Hodgkin lymphoma.
• The most common first treatment is rituximab + • Other treatments include combination chemotherapy alone, tablet chemotherapy, and radioimmunotherapy.
• Rituximab on its own is also used to maintain remission.
At the moment, rituximab maintenance therapy is givenafter a second course of chemotherapy. Current clinicaltrials are finding out more about maintenance rituximab.
• Your treatment will be chosen according to your • Clinical trials continue to find out more about treating low grade lymphoma. You may be invited to take partin a clinical trial.
Practicalities of treatment
This part of the booklet will discuss: How chemotherapy is given How antibody therapy is given How radiotherapy is given Side effects of treatment What happens after treatment About your hospital
People with lymphoma may be treated at local hospitals or atlarger hospitals with cancer centres. Sometimes people willhave their treatment shared between the two.
Your GP, or the doctor who finds out that you have lymphoma,will send you to the nearest hospital with a lymphomaspecialist. Don't worry if you are having treatment at a smallhospital. Larger hospitals do not necessarily have better results.
A lymphoma specialist might be a haematologist (someonewho specialises in diseases of blood cells) or an oncologist(someone who specialises in cancers). Lymphoma expertscome from both these fields of medicine. Clinical NurseSpecialists also play an important role in the care of peoplewith lymphoma.
Your doctor will not mind if you want to ask questions aboutyour treatment hospital. Some of the questions you might liketo ask are: • Will your doctor have links with other lymphoma • Does the hospital have a clinical nurse specialist or other The Lymphoma specialist cancer nurse? Association hasan information • Does the hospital have a laboratory on site for fast sheet giving blood test results? general adviceabout how to • Does the hospital have close links with specialist find the best lymphoma pathologists? • Does the hospital participate in clinical trials? Please telephonethe helpline for • What other experts are there to help if you need them? For example, will you be able to see a counsellor if youneed to? How is chemotherapy given?
The word chemotherapy literally means treatment with drugs.
Drugs for cancer are called cytotoxic drugs because they killcells:‘cyto' means cell, and ‘toxic' means poisonous.
Chemotherapy works by interrupting the reproductive cycle ofthe lymphoma cell. Different chemotherapy drugs do this indifferent ways. Chemotherapy drugs particularly target cellsthat divide quickly.
Chemotherapy for lymphoma often involves giving more than You wil find one kind of drug. This increases the chances of killing as many cancer cells as possible.
Many people with low grade non-Hodgkin lymphoma will have discussed on chemotherapy taken as a tablet. The hospital pharmacy will pages 57 – 69. prepare your tablets for you to take home. You will haveregular checkups during the time you are taking them.
Other chemotherapy for low grade non-Hodgkin lymphoma isgiven intravenously. This means through a tube into one ofyour veins. This involves coming to hospital to have treatment.
Chemotherapy is usually given over a period of several months.
The exact timetable for your treatment will depend on what kindof chemotherapy you are having. You will be given informationabout your treatment and what side effects to expect.
Intravenous chemotherapy for low grade lymphoma is usually
given as an outpatient. This means you will visit hospital on the
day of treatment but go home afterwards.
In some cases admission to hospital may be necessary. Thismight be because of treatment side effects. You may, forexample, have a very low blood count and develop an infection.
Admission might also be necessary because certain drugcombinations are known to cause more severe side effects.
Intravenous drugs are delivered through a small tube that is putinto one of your veins. The nurse or doctor will often use avein on the back of your hand or in your lower arm. A needleis put in first, and then taken out, leaving a soft tube resting inthe vein. This is secured with adhesive to keep it in position.
Usually, this tube will be taken out before you go home andanother one put in next time.
On some occasions people will have intravenous chemotherapythrough a central line. A central line is a more permanentintravenous tube. It sits in a larger vein further inside yourbody. Central lines are relatively uncommon for people withlow grade lymphoma.
Intravenous drugs are usually given as an ‘infusion', or a drip.
They are mixed with another fluid in a bag, and the bag is set up to drip into the tube in your arm over a period of time.
The bag of fluid needs to be kept higher than your arm, and itwill usually be hung on a pole. The poles are often mobile, soyou can walk around while the drip is connected. You mightneed to go to the toilet more often because of the extra fluid.
Drugs are often given using machines that regulate the flow ofliquid. They are boxes that attach to the pole, and theintravenous tube is fed through them. They can ‘beep'from time to time if something is not right. This might soundalarming at the time, but don't worry. The flow of fluid stopsuntil the problem is sorted out.
How is monoclonal antibody therapy given?
Rituximab is given as a drip in the same way as otherintravenous drugs. The first infusion is given quite slowly tohelp prevent side effects. This usually takes around 4 – 6 hours.
Subsequent infusions may be given over a shorter period oftime if you do not have significant side effects.
Rituximab is usually given as an outpatient, so you don't have tostay in hospital. Sometimes people are asked to stay in hospitalfollowing the first infusion of rituximab.
Radioimmunotherapy – antibody therapy + radioactive isotope– is given as a single injection following a short course ofrituximab.
How is radiotherapy given?
Radiotherapy uses high energy rays directed through theenlarged lymph nodes. These rays are similar to the rays used Side effects of when taking an X-ray, but they are delivered in much higher doses. The rays stop the cells from dividing and kill them.
are discussedon pages Radiotherapy is used for some people with low grade non- 57 – 60. Hodgkin lymphoma. It may be used as a treatment on its ownfor early stage disease.
Radiotherapy is usually given daily Monday to Friday, and youwill be able to go home after each treatment. Treatmentusually takes 4 – 6 weeks.
A radiotherapy department can feel like quite a high-tech andimpersonal environment, with big machines and no windows.
It can be unnerving at first, particularly as you will be left alonefor some of the time.
The first stage of treatment is planning. This may involve morethan one visit to the department before treatment starts. Theradiographer will mark your skin with a marker pen. Thesemarks need to remain visible throughout treatment.
During treatment, you will be carefully positioned on a narrowtable and asked to stay very still. The radiographer may covercertain parts of your body that do not need treatment. Thelights in the radiation room are dimmed while you are gettinginto position. You will be left alone for the time it takes to givethe treatment. The radiographer will be watching from a roomnext door. You will be able to hear what they say and they canhear you. The length of time treatment takes will depend onyour individual situation, but it will be somewhere between5 and 20 minutes.
This kind of radiotherapy does not make you radioactive, andthere will be no risk to those close to you.
The radiotherapy itself is completely painless, but it can haveuncomfortable side effects.
• Lymphoma is treated by either a haematologist or an oncologist.
• Most treatment for low grade non-Hodgkin lymphoma is given as an outpatient.
• In some instances hospital admission will be required.
• Chemotherapy for low grade non-Hodgkin lymphoma is given as a tablet or intravenously. Intravenouschemotherapy may be given via a central line, which is amore permanent intravenous tube.
• Antibody therapy is given intravenously. Sometimes hospital admission is needed for the first dose of antibodytherapy.
• Radiotherapy may be used for treating low grade non- Hodgkin lymphoma, especially for early stage disease.
• Radiotherapy is given on weekdays over a course of several weeks.
Side effects of treatment
This part of the booklet discusses: Common side effects of treatment Tips for coping with side effects The text written in italics refers to side effects of radiotherapy.
Common side effects
Side effects occur because lymphoma treatments damage
healthy cells as well as lymphoma cells.
The side effects of chemotherapy will depend on what drugsyou are having. You will be given information about whatto expect.
The side effects of radiotherapy wil depend on what part of your For information body is being treated. You wil be given information about what to about the long- expect and how to take care of yourself. You may find that you term side effects have no side effects to start with but that they become more of treatment obvious towards the end of your course of treatment. please telephoneour helpline. Most treatment side effects are short term. Some may belong-term or permanent. Your doctors should discuss this withyou before treatment starts.
People in later life, in particular those who have other The Lymphoma medical problems, are likely to experience greater difficulty with side effects.
Damage to the bone marrow
discussing the The most important side effect of chemotherapy is damage to treatment of the bone marrow. The bone marrow is responsible for lymphoma in producing the body's blood cells. These include white blood later life. Please cells that help us to fight infection, red blood cells that carry telephone the oxygen and platelets that stop us bleeding. These cells are helpline for measured using a blood test called a blood count.
Chemotherapy can cause neutropenia, or a shortage of whitecells called neutrophils. This means you will be more at risk ofinfection during your treatment. You will be most at risk fromabout 7 – 10 days after each dose. A low white cell count canlast for some time.
You should contact your hospital immediately if you
develop signs of an infection. Signs of infection are
listed in the table on page 63.
If you develop an infection, or if your white cell count is toolow, it may be necessary to delay treatment for a short periodto give your blood count a chance to recover. You may have tostay in hospital during this time.
Chemotherapy can also cause anemia, or a shortage of redblood cells. This is particularly the case with low grade non-Hodgkin lymphoma because the disease itself may have causedanemia to start with.
Sometimes chemotherapy causes thrombocytopenia, or ashortage of platelets. This will make you more susceptible tobruising and bleeding.
Your blood count can be affected by radiotherapy too, and you wil bemore at risk of infection during treatment. Change in taste, loss of appetite and
Most people find that they have some problems with eating and
diet. For example, food may start to taste different. You may
lose your appetite. You may find that nausea or a sore mouth
makes it difficult to eat. You may experience loss of weight.
If you are having radiotherapy to the chest or neck, you may alsofind that swal owing becomes difficult. Radiotherapy to the upperneck or head wil cause a sore mouth. Nausea and vomiting
Some chemotherapy drugs may make you feel sick – or
nauseous – after treatment. You might vomit too. You will be
given anti-sickness drugs to help. These are called ‘anti-emetics'.
Tell your specialist or nurse how you are feeling. If the drugs
don't work, tell someone. Sometimes a change in the anti-
sickness drug is needed if the first drug doesn't work.
Sometimes radiotherapy can make you feel sick, in particular if yourabdominal area is being treated. It may help to have anti-sicknessmedications before treatment starts. Fatigue
Fatigue is one of the most common experiences for people
with lymphoma. Cancer related fatigue is quite different from
normal tiredness. It can mean that you find it difficult to
concentrate or make decisions. You might be 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.
Fatigue is thought to be the result of a combination of factors,including your treatment, the impact of your illness on your body, a low red cell count (anemia) and anxiety.
It may take some months following treatment before your fatigue goes away.
Fatigue is associated with both chemotherapy and radiotherapy. Hair loss
Chemotherapy drugs commonly cause hair loss. This means
that you may lose some or all of your hair. Hair loss will start
within a couple of weeks of starting treatment. It can come out
in large quantities, and this can be very distressing.
Hair loss will only be short term, and your hair will grow backafter treatment has finished. It usually starts to grow backwithin a month or two of treatment finishing. It might take 6to 12 months for it to return to normal.
If you are having radiotherapy, hair loss should only occur in thearea to be treated. This hair loss wil be temporary, and hair wilstart to grow back a few months after treatment. Sore mouth
Chemotherapy drugs may give you a sore mouth. This is
because the chemotherapy damages the cells of the lining of
your mouth. You will be more at risk of mouth ulcers and
infections. This is called mucositis. It can be very uncomfortable.
If you are having radiotherapy to the head, neck or upper chest youmay find that your mouth or throat becomes sore. Sore skin
The skin in the radiotherapy treatment area can become pink,
dry and itchy. If you have dark skin it might become darker.
Sometimes it becomes blistered, a bit like sunburn. This is
particularly likely to occur in folds of skin such as under the breast
or in the groin. Skin reactions usual y peak a few days after the
end of treatment and then start to heal. You wil be given
instructions about caring for your skin.
Some chemotherapy drugs cause damage to the nerves that
carry information about touch, temperature, pain and
sensation. The drugs can also damage the nerves involved in
muscle movement. This is called peripheral neuropathy.
Peripheral neuropathy is usually related to a particular groupof drugs, which includes vincristine and vinblastine.
Peripheral neuropathy commonly affects the nerves in yourhands and feet, but you might feel it in other places too. It cancause pins and needles, pain and numbness. It sometimes causes clumsiness and problems with balance. Sometimes itproduces increased sensitivity to heat.
Symptoms of peripheral neuropathy usually develop soon afteryou start treatment. For most people these will be temporary.
Some people will experience long-term or permanent damage.
Not everyone will get peripheral neuropathy. If you doexperience symptoms, tell your doctor. Your doctors mightmake a change to your treatment to prevent it getting worse.
The drugs cyclophosphamide and ifosfamide can cause
irritation and bleeding from the lining of the bladder and the
kidneys. You will have to drink lots of extra fluid with these
treatments. You may have extra fluid through your drip. A drug
called Mesna can be given to prevent bladder and kidney
complications. It is given with ifosphamide and sometimes with
Your nurses may check your urine for signs of blood. If younotice blood in your urine, you should tell someone straightaway. Ask your team for advice about prevention of bladderproblems.
Some treatments for lymphoma may reduce your fertility.
This is particularly the case with certain chemotherapy drugs,
with radiotherapy to the groin, and with high dose
chemotherapy used in bone marrow and stem cell transplant.
Your specialist should discuss this with you before treatmentstarts, but it will not be possible to say for certain howyour fertility might be affected. Men may wish to considerstoring sperm prior to treatment. The options for women aremore limited.
Reduced fertility in women is related to age. Women closer tothe age of normal menopause are more likely to experience reduced fertility, and may experience early menopause.
You may find that your periods become irregular, or stopaltogether, during treatment.
Doctors will advise that women with lymphoma do notbecome pregnant during the time of their treatment. Youshould continue to use contraceptives during treatment.
Side effects of monoclonal antibody therapy
The most common side effects of antibody therapy are shivers,
fevers, headache and flu-like symptoms.
These are more common with the first infusion. The first about dealing infusion is given slowly to reduce side effects. You will be given paracetamol and antihistamines to prevent side effects.
Occasionally people have more serious side effects and your our helpline. doctor may decide to discontinue antibody therapy.
Tips for coping with side effects
The tables on the following pages give information about
coping with side effects.
It is important to let your medical team know about your sideeffects. Tell them if any of the side effects change during yourtreatment. Your doctors and nurses won't always ask how youare feeling, and they might assume you are OK if you don't sayanything. There are usually things that can be done to helpwith side effects.
What to do
Contact the hospital if you develop signs of
infection such as: fever, temperature above 38oC,
chills and sweating, mouth sores and ulcers,cough or sore throat, redness or swelling aroundsores on the skin, diarrhoea, burning sensationwhen passing urine, unusual vaginal dischargeor itching.
Wash well and regularly. Wash hands beforemeals, after using the toilet, after using publicfacilities. Avoid places where infection risk isincreased, such as swimming pools.
Avoid foods that contain lots of live bacteria.
These include: runny cheeses, take aways, raw orundercooked eggs, peppercorns, undercookedmeats and fish, paté. Ask your nurse forinformation on ‘clean diets'.
Don't keep food for longer than 24 hours inthe fridge.
Take care when handling pets – avoid bites orscratches and wash your hands afterwards.
Wear gloves for gardening.
Tell your doctor if you are fatigued, if you feel short of breath, abnormally tired or have abnormal aches and pains.
Ask about what treatment you might havefor anemia.
What to do
Report bruising, bleeding. Notify doctors immediately if you feel very unwell, faint ‘thromobocytop or clammy.
enia' Avoid contact sports or very vigorous exercise.
Take care to avoid injury when doing day to daythings like cooking and gardening.
Try to eat little and often and avoid big meals.
Eat whenever you are hungry whether or not this is your usual mealtime.
Avoid things you don't like. Try foods that tastestronger – marinated foods, savoury rather thansweet. Eat food warm rather than hot.
Have a ready supply of things that are quick andeasy to prepare.
Try to supplement your diet with nutritiousdrinks, but not at the same time. Take drinksthrough a straw.
Eat with others in a pleasant environment.
Take exercise where possible.
Rinse mouth before meals and practice goodmouth hygiene.
What to do
Ask your doctor if your treatment might causeconstipation, and ask for advice about usinglaxatives to prevent it.
Make sure you drink plenty.
Try a hot drink in the mornings.
Eat a high fibre diet if possible.
Take gentle exercise.
Ensure adequate fluid intake.
Ask your doctor for treatment for diarrhoea.
Take regular light exercise, such as walking.
Take regular rests or short naps throughoutthe day.
Ask your doctor if you are anemic, and whetherany treatment will help your anemia.
Plan your activities: do a bit less of what is lessimportant, and plan the important things for whenyou have more energy. Accept offers of help withday to day tasks.
Aim for a good night's sleep on a regular basis.
Make time to see friends and take part in normalsocial activities.
What to do
Take anti sickness drugs.
Tell someone if they don't work.
Try travel sickness wrist bands from the pharmacy.
These prevent nausea by using acupressure points.
Try relaxation techniques.
Avoid cooking smells and seek help with preparingmeals.
Eat smaller meals, cold or at room temperature.
Keep surroundings as peaceful and clean as possible,and encourage fresh air.
Have hair cut short before treatment starts.
Discuss wigs with the hospital team, or try hatsor scarves.
Avoid using heated rollers or hairdryers, avoidchemical treatments such as perms and hair dyes.
Avoid things that pull at your hair such as rollersand tight elastics.
Use wide toothed combs and soft bristled hair brushes.
Protect the skin of your scalp from becoming dry.
Avoid exposure to heat and cold.
Wearing a hair net or towelling turban to bed willhelp to collect hair lost overnight.
Use make up, jewellery and accessories to give youmore confidence.
What to do
Tell your doctors if you have pins and needles or loss of feeling in fingers and toes, loss of balance,abdominal pain or constipation.
Take care to avoid injury to fingers and toes,which will be less sensitive than usual: avoidextreme temperatures, wear gloves for gardening,take care when cooking.
Keep your feet and hands warm as cold can makesymptoms worse.
Try gentle massage and exercise of fingers andtoes by flexing and stretching for a few minutesfour times a day.
Wear comfortable shoes – avoid high heels orshoes that are tight.
Inspect your feet regularly to check for damagedskin in parts that are numb, particularly on thesoles of your feet and around toenails.
Visit your dentist before starting treatment.
Practice good oral hygiene – the hospital mayprescribe special mouthwashes for use at home.
Avoid mouthwashes containing salt or alcohol.
Use a soft bristled toothbrush.
Avoid alcohol and tobacco.
Rinse mouth after meals.
Keep your lips moist with lip creams. Vaseline™works well and is easy to find.
What to do
Avoid hot, spicy foods or foods coarse in texture.
Cool, easy to swallow things can help, like ice creamand yoghurt.
Sip drinks through a straw.
Ask for pain killers or other medication to help.
Ask your team for instructions about looking afteryour skin.
Do not use creams unless recommended by yourspecialist. Avoid soaps, talcum powder anddeodorants.
Avoid rubbing the skin. If bathing, use lukewarmwater and pat dry with a towel.
Men having radiotherapy to the head or neck shoulduse electric razors rather than wet shaving, or avoidshaving altogether.
Avoid exposure to sun and wind.
• There are many potential side effects of treatment.
Your side effects will depend on what kind of treatmentyou are having. You should be given information aboutwhat side effects to expect.
• Most side effects of treatment are short-term.
They should improve within weeks of finishing treatment.
• Some side effects may be permanent.
• You are likely to have more difficulty with side effects if you are older, or if you have other medical problems.
• You should tell the team at the hospital immediately if you develop signs of infection.
• You should keep the hospital team informed of any side effects you have.
What happens following treatment?
People with low grade lymphoma usually attend a clinic forfollow-up appointments on a regular basis.
Appointments are generally every 3 to 6 months, or sometimes less frequent, depending on the individual.
Don't feel that you have to wait until your next appointment with lymphoma, if you feel worried about anything. Most specialists will encourage you to bring your appointment forward if you experience changes in how you are feeling.
You may find that it helps to talk to your GP if you are dealing with concerned. He or she can be a valuable source of support feelings and and advice closer to home.
"whilst it is obviously not something to be recommended, helpline for having NHL has given me new insights and appreciation of life. I have done my best to pass these positive benefits on to others, so that they too realise that life must be cherishedand enjoyed – not taken for granted and endured!" Other useful organisations
Benefits Enquiry Line
Tel: 0800 882 200
British Association for Counselling
35 – 37 Albert Street
Tel: 0845 443 5252
Website: www.bacp.co.ukEmail: email@example.com Will provide a list of accredited counsellors in your area.
3 Bath Place
London EC2A 3JR
Tel: 0808 800 1234
Website: www.cancerbackup.org.ukEmail via website.
Providers of information about all cancers, cancer treatments and living withcancer. Cancerbackup merged with Macmillan Cancer Support in 2008.
Cancer Counselling Trust
1 Noel Road
London N1 8HQ
Tel: 020 7704 1137
Providers of face-to-face and telephone counselling services.
Cancer Research UK
61 Lincolns Inn Field
London WC2A 3PX
Tel: 0808 800 40 40
Website: www.cancerhelp.org.ukEmail via website.
Provide information on all cancers. Also largest voluntary provider offunding for cancer research.
20 – 25 Glasshouse Yard
London EC1A 4JS
Tel: 0808 808 7777
Website: www.carersuk.orgEmail: firstname.lastname@example.org Free and confidential information for carers.
212 Spitfire Studios
63 – 71 Collier Street
London N1 9BE
Tel: 0845 123 2320
Provides information about the symptoms and treatment of depression,national and local groups.
St Christopher's Hospice
51 – 59 Lawrie Park Rd
London SE26 6DZ
Help the HospicesHospice House34 – 44 Britannia StreetLondon WC1X 9JG Tel: 0870 903 3903 Website: www.hospiceinformation.infoEmail via website.
Providers of information about hospice and palliative care services.
Leukaemia Research Fund
43 Great Ormond Street
London WC1N 3J J
Tel: 020 7405 0101
Website: www.lrf.org.ukEmail: email@example.com Funds research into the causes and treatment of leukaemia, lymphoma andrelated diseases. Publish booklets on a range of subjects.
Macmillan Cancer Support
89 Albert Embankment
London SE1 7UQ
Macmillan provide practical and financial support to those affected bycancer. They also provide funding for cancer health professionals.
Macmillan can also provide information about cancer. Macmillan'sinformation service is now provided by Cancerbackup, following a recentmerger between the two organisations.
Hancock, B.W., McLennan, K.,Armitage J.O., (eds.), Malignant Lymphoma,
London: Hodder Arnold, 2000
Otto, SE., Oncology Nursing:Third edition, St Louis: Mosby, 2000
Provan D, Chisholm M, Duncombe A, et al., Oxford Handbook of Clinical
Haematology: Second Edition, Oxford: Oxford University Press, 2004
Abbot, B.,‘Chronic Lymphocytic Leukemia: Recent Advances in Diagnosis
and Treatment', January 2006, The Oncologist,Vol. 11, No. 1, 21-30
Adamsen, L. et al,‘The effect of a multidimensional exercise intervention on
physical capacity, well being and quality of life in cancer patients undergoing
chemotherapy', in Supportive Care in Cancer, 2006 Feb;14(2):116-27
Ardeshna, K.M. et al,‘Long-term effect of a watch and wait policy versus
immediate systemic treatment for asymptomatic advanced stage
non-Hodgkin lymphoma. A randomised controlled trial', The Lancet, 2003,
August 16,Vol 362, Issue 9383
Evans, L.S., Hancock, B.W.,‘Non-Hodgkin lymphomas', The Lancet,
Volume 352, July 12, 2003
Incidence of non-Hodgkin lymphoma, UK, 2002,
http://info.cancerresearchuk.org/cancerstats/types/nhl/ accessed August 2006
Illidge,T and Chan, C.,‘How have outcomes for patients with follicular
lymphoma changed with the addition of monoclonal antibodies?', Leukaemia
Lymphoma, 2008 Jul;49(7):1263-73
Gerwitz AM,Winder JN, and Zuckerman K (eds) Haematology 2007:
American Society of Haematology Education Programme Book,ASH,
‘[90Y]-ibritumomab tiuxetan ([90Y]-ibritumomab tiuxetan) consolidation of
first remission in advanced stage follicular NHL: First results of the
international randomized Phase 3 First-line Indolent Trial (FIT) in 414
Patients'. Abstract# 643. Data presented at the American Society of
Hematology (ASH) Annual Meeting in December 2007.
Van Oers, M.H.,‘Rituximab maintenance therapy: a step forward in follicular
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Incidence of non-Hodgkin lymphoma, UK, 2004,
http://info.cancerresearchuk.org/cancerstats/types/nhl/ accessed July 2008
About our publications:
The Lymphoma Association is committed to the provision of highquality information for people with lymphoma, their families and friends.
We produce our information in accordance with nationally recognisedguidelines. These include the DISCERN tool for information abouttreatments, the NHS Toolkit for producing patient information, and theCampaign for Plain English guidelines.
Our publications are written by experienced medical writers, in closecollaboration with medical advisors with expertise in the appropriate field.
Textbooks and professional journals are consulted to ensure thatinformation is as up to date as possible. References are provided where theyhave been used. Some publications are written by professionals themselves,acting on guidance provided by the Lymphoma Association. Our publicationsare reviewed every two years and updated as necessary.
Our publications are reviewed by a panel of volunteers with experience oflymphoma. Publications are also reviewed by members of the LymphomaAssociation helpline team, who have many years collective experience ofsupporting those with lymphoma.
In some instances, our publications are funded by educational grants frompharmaceutical companies. These sponsors do not have any involvement inthe content of a publication. They are not invited to see the content andhave no editorial input.
The Lymphoma Association provides: • freephone helpline • emotional support for those affected by lymphomas • information about lymphomas and their treatments • audio and video library • telephone links to others with similar experience of lymphoma • quarterly newsletter • network of support groups • national and regional patient conferences • Lymphoma Nurse Specialists Publisher: Lymphoma Association Author: Catriona Gilmour Hamilton The information in thisbooklet can be madeavailable in large print Helpline open 9am-6pm Monday - Thursday,9am-5pm Friday Lymphoma AssociationPO Box 386, Aylesbury Bucks HP20 2GAAdministration: 01296 619400 Lymphoma Association ISBN 978-0-9555499-0-8 This edition is due to be revised in 2010 Registered Charity No. 1068395 All rights reserved. No part of this publication may be reproduced ortransmitted in any form or by any means, electronic or mechanical, includingphotocopying, or recording in any information storage or retrieval system withoutpermission in writing from the Lymphoma Association.
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