Leukaemia Foundation

Understanding Leukaemias, Lymphomas, Myeloma and related blood disorders

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This booklet is designed to provide patients, carers and families with some general information about leukaemias, lymphomas, myeloma and related blood disorders. It describes the possible causes and symptoms of these diseases, how they are diagnosed and the available treatment options. This booklet also provides details on the support services available to patients and families through the Leukaemia Foundation.

Updated August 2007

Languages other than English

This booklet is also available in the following languages:

• (Arabic)
• (Chinese)
• (Croatian)
• (Filipino)
• (Greek)
• (Italian)
• (Korean)
• (Macedonian)
• (Vietnamese)

Living with leukaemias, lymphomas, myeloma and related disorders

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This booklet is designed to help patients, carers and families understand and cope with the complex practical and emotional issues that come with living with leukaemias, lymphomas, myeloma or related blood disorders. It addresses topics such as the impact of diagnosis - how to tell others and dealing with the increased stress on families and relationships; coping with treatment; providing support; looking after yourself; survivorship issues and grief. It also provides detail on the support services available to patients and families through the Leukaemia Foundation.

Each year in Australia approximately 9000 people are diagnosed with a leukaemia, lymphoma or myeloma the equivalent of 25 people every day.

Dictionary of terms

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The Dictionary of Terms is available as a quick-reference tool to help patients, carers and families to understand some of the unfamiliar medical and technical words you may come across during the diagnosis and treatment of a blood cancer, or related blood disorder.

A glossary of terms is now located at the back of each Leukaemia Foundation booklet.

Understanding lymphomas (Non-Hodgkin’s Lymphomas or B and T-cell Lymphomas)

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This booklet is designed to help patients, carers and families understand more about Non-Hodgkin Lymphomas (or B-cell & T-cell Lymphomas). These diseases represent the most frequently diagnosed blood cancers in Australia, with over 4000 people diagnosed each year, usually over the age of 45 years. Lymphoma is a general name given to cancers that arise in the lymphatic system, part of the body’s immune system. Lymphomas affect developing lymphocytes, specialised white blood cells that help protect the body from disease and infection. Abnormal lymphocytes multiply in an uncontrolled way, forming collections of lymphoma cells in various parts of the body, usually in the lymph nodes (glands). There are many different types of B and T-cell lymphomas, many of which affect the body in different ways and respond differently to different types of treatments.

Understanding Hodgkin Lymphoma

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This booklet has been written for people diagnosed with Hodgkin Lymphoma and their families and friends. It provides information about the diagnosis and treatment of this rare form of Lymphoma which occurs most commonly in younger people (15-30 years). About 400 cases are diagnosed in Australia each year including about 25 children (0-14 years). This form of lymphoma usually responds well to treadment and the survival rates are very good.

Updated October 2007

Understanding Acute Myeloid Leukaemia

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This booklet is designed to help patients, carers and families understand more about acute myeloid leukaemia (AML), a type of cancer that affects the blood and bone marrow. In AML there is an overproduction of immature blood cells, usually immature white blood cells called myeolblasts, or leukaemic blasts. These cells quickly crowd the bone marrow, preventing it from making adequate numbers of normal blood cells. They also spill out into the bloodstream, and circulate to various parts of the body. Each year in Australia approximately 715 people are diagnosed with AML. AML can occur at any age but it is more common in adults over the age of 60 years. AML develops and quickly and usually needs to be treated soon after it is diagnosed.

Understanding Chronic Lymphocytic Leukaemia

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This booklet is designed to help patients, carers and families understand more about chronic lymphocytic leukaemia (CLL), a slow-growing leukaemia that affects developing lymphocytes, specialised white blood cells that help protect the body against disease and infection. CLL is the most common type of leukaemia, diagnosed in approximately 718 people in Australia each year. The disease usually occurs in people over the age of 60 years - it does not occur in children. For most people, CLL remains stable for many months and years and they can continue to live a normal life, despite their diagnosis. For others, especially where there are signs of disease progression, CLL may represent a more serious condition.

Updated July 2007

Understanding Chronic Myeloid Leukaemia

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This booklet is designed to help patients, carers and families understand more about chronic myeloid leukaemia (CML), an initially slow-growing leukaemia where the bone marrow produces too many white blood cells called granulocytes. These cells spill out into the blood stream and, overtime, accumulate in various organs like the spleen and liver. For most people, with treatment, CML remains stable for a long time, causing few if any symptoms. For others it progresses rapidly, transforming from a relatively stable disease into a rapidly-progressing one, resembling acute leukaemia. . Each year in Australia approximately 249 people are diagnosed with CML. CML can occur at any age but it is more common in adults over the age of 40 years.

Updated February 2007

Understanding Acute Lymphoblastic Leukaemia in Adults

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This booklet is designed to help patients, carers and families understand more about acute lymphoblastic leukaemia (ALL) in adults. Each year in Australia approximately 301 people (175 children, 0-14 years) are diagnosed with ALL The abnormal cells in ALL are extremely immature lymphocytes - specialised white blood cells that normally help protect the body against disease and infection. In ALL, these cells quickly crowd the bone marrow, preventing it from making adequate numbers of normal blood cells. They also spill out into the bloodstream, and can accumulate in various parts of the body. These days, with treatment, the majority of children can be cured of ALL. Cure rates are more variable in adults.

Updated August 2007

Understanding Acute Lymphoblastic Leukaemia in Children

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This booklet is designed to help patients, carers and families understand more about acute lymphoblastic leukaemia (ALL) in children. ALL is the most common form of leukaemia in children. Each year in Australia approximately 200 children (0-14 years) are diagnosed with ALL making it the most common childhood cancer. The abnormal cells in ALL are extremely immature lymphocytes - specialised white blood cells that normally help protect the body against disease and infection. In ALL, these cells quickly crowd the bone marrow, preventing it from making adequate numbers of normal blood cells. They also spill out into the bloodstream, and can accumulate in various parts of the body. These days, with treatment, the majority of children can be cured of ALL.

Updated October 2007

Understanding Myeloma

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This booklet is designed to help patients, carers and families understand more about myeloma, also known as multiple myeloma, a cancer of plasma cells (mature B-lymphocytes). Under normal conditions, plasma make antibodies to help fight infections and disease. Myeloma usually arises in the bone marrow where plasma cells undergo a malignant change and become myeloma cells. These cells multiply without any proper order, forming tumours that accumulate in different parts of the body, especially in the bone marrow and on the surfaces of bones. Myeloma affects older people, usually over the age of 60 years - it does not occur in children. In Australia, more than 1,115 people are diagnosed with myeloma each year.

Understanding Myelodysplastic Syndromes

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This booklet is designed to help patients, carers and families understand more about myelodysplastic syndromes (MDS) a group of diseases that affect, to a greater or lesser extent, the production of normal blood cells in the bone marrow. There are several different types of MDS and the disease can vary in its severity and the degree in which normal blood cell production is affected. People with mild disease are often found to simply be anaemic or have lower than normal white blood cell or platelet count. In some cases, MDS can progress to acute myeloid leukaemia. It is therefore often regarded as a pre-leukaemic disorder.

MDS can occur at any age, including occasionally in children. Over 90% of cases however, occur in people over the age of 60 years.

Understanding Autologous Transplants

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This booklet is designed to help patients, carers and families understand more about autologous bone marrow and peripheral blood stem cell transplants. Stem cell transplants are used to treat a range of diseases including: acute and chronic leukaemias, lymphomas, myeloma, some solid tumours, aplastic anaemia and some some immune system disorders (for example scleroderma).

There are two main types of stem cell transplants - autologous and allogeneic. This booklet describes autologous transplants where the patient’s own blood stem cells are collected in advance and returned to them after they receive high-dose chemotherapy to treat their disease. The stem cells repopulate the bone marrow, which has been damaged as a result of the high dose treatment, and help rebuild the body’s blood and immune systems. The recovery of these systems is vital for survival.

In 2004, a total of 1,168 stem cell transplants were carried out in Australia. Of these 808 were autologous (745 of these were single autologous transplants and 63 were staged autologous transplants).

Updated April 2008

Understanding Allogeneic Transplants

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This booklet is designed to help patients, carers and families understand more about allogeneic bone marrow and peripheral blood stem cell transplants. Stem cell transplants are used for a range of diseases including: acute and chronic leukaemias, lymphomas, myeloma, some solid tumours, aplastic anaemia and some some immune system disorders (for example scleroderma).

There are two main types of stem cell transplants - autologous and allogeneic. This booklet describes allogeneic transplants, where the stem cells are donated by another person who’s tissue type is compatible with the patient’s. The donor may be related or unrelated to the patient.

A stem cell transplant is necessary to ensure that the bone marrow is repopulated with healthy blood stem cells following high-dose treatment. The new blood stem cells will rebuild the body’s blood and immune systems. The recovery of these systems is vital for survival. In an allogeneic transplant it is also hoped that the donor’s stem cells will help destroy any left-over disease in the patient’s body.

In 2004, a total of 1,168 stem cell transplants were carried out in Australia. Of those, 360 were allogeneic (203 of these were from related stem cell donors and 157 were from matched unrelated stem cell donors)

Updated March 2008

Young Adults with a Blood Cancer

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This booklet has been developed to help young adult patients, their friends and families understand blood cancers. The booklet provides information on diagnosis and treatment, side effects and the physical, social and psychological impacts of diagnosis and treatment. It also discusses longer term effects and life after cancer.

Updated September 2007

Coping with childhood leukaemia

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(This booklet is only available as a pdf file. See also the new booklet above on Understanding ALL in Children).
This booklet is designed to provide patients, carers and families with information about some important emotional and practical issues related to the diagnosis and treatment of childhood leukaemia. Leukaemia is the most common form of childhood cancer. Here we look at some of the emotions and reactions that may arise and the support networks and people who can help you and your family during the diagnosis and treatment of your child’s illness.

 

Eating Well: a practical guide for people living with leukaemias, lymphomas, myeloma and related blood disorders

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Eating well is always important, but it is especially important if you have a leukaemia, lymphoma, myeloma or a related blood disorder. These diseases and their treatments place extra demands on you both physically and emotionally and it is important that the food you eat provides you with the energy and nutrients necessary to help meet these demands. This booklet provides practical information and advice on nutrition for patients, families and carers before, during and after treatment.