hodgkin lymphoma A guide for patients and families

1800 620 420 leukaemia.org.au Contents

Acknowledgements 4

Introduction 5

The Leukaemia Foundation 6

Bone marrow, stem cells and blood 11

The lymphatic system 16

What is lymphoma? 18

What is Hodgkin lymphoma? 18

What causes Hodgkin lymphoma? 19

What are the signs and symptoms of Hodgkin lymphoma? 20

Which doctor? 21

How is Hodgkin lymphoma diagnosed? 22

Types of Hodgkin lymphoma 23

Treatment 30

Supportive therapies 49

Body image, sexuality and sexual activity 50

Potential late effects of treatment 51

Making treatment decisions 52

Information and support 53

Useful internet addresses 54

Glossary of terms 55 Acknowledgements Introduction

The Leukaemia Foundation gratefully This booklet has been written In some parts of the booklet we have acknowledges the following groups who have to help you, your family, friends provided additional information you may assisted in the development and revision of the and loved ones understand wish to read on selected topics. information in this booklet: people who have more about lymphomas. Some of you may require more experienced Hodgkin lymphoma as a patient or information than is contained in this Some of you may be feeling anxious or a booklet so we have included some carer, Leukaemia Foundation support staff, little overwhelmed if you, or someone internet addresses that you might find haematology nursing staff and clinical you care for, has been diagnosed with useful. In addition, many of you will haematologists representing the various states lymphoma. This is normal. Perhaps you receive written information from the and territories of Australia. have already started treatment or you doctors and nurses at your are discussing different treatment treating hospital. 4 The Leukaemia Foundation values feedback from people options with your doctor and your family, 5 friends and loved ones. It is not the intention of this booklet to affected by Hodgkin lymphoma and the health care recommend any particular form of professionals working with them. If you would like to make Whatever point you are at, we hope the treatment to you. You need to discuss suggestions, or tell us about your experience of using this information contained in this booklet is your particular circumstances at all times booklet, please contact us at [email protected] useful in answering some of your with your treating doctor and team. February 2018 questions. It may raise other questions, which you should discuss with your We hope you find this booklet useful in doctor, or specialist nurse. providing support and information. We would appreciate any feedback from you You may not feel like reading this booklet so we can continue to help you and your from cover to cover. It might be more family in the future. useful to look at the list of contents and read the parts that you think will be of most use at a particular point in time. We have used some medical words and terms which you may not be familiar with. Their meaning is explained in the booklet and/or in the glossary of terms in the back of this booklet. Leukaemia Foundation staff with health professional qualifications provide patients and their families with information and support across Australia.

The Leukaemia Foundation Support Services Education & Support programs The Leukaemia Foundation offers The Leukaemia Foundation is appointments, driving more than one The Leukaemia Foundation has million kilometres each year to ensure you and your family, Hodgkin lymphoma the only national charity people get the medicines they need to a team of highly trained and specific and general education and dedicated to helping those with beat their blood cancer. caring Support Services staff support programs throughout Australia. leukaemia, lymphoma, myeloma with qualifications and These programs are designed to The Leukaemia Foundation also empower you with information about and related blood disorders provides counselling, comprehensive experience in nursing or allied various aspects of diagnosis and survive and then live a better information, education and support health that work across treatment and how to support your quality of life. programs and financial assistance to the country. general health and wellbeing. help the 60,000 Australians who are 6 It exists only because of the generous currently living with a blood cancer. We can offer individual support Emotional support 7 and ongoing support of the Australian The Leukaemia Foundation also funds and care to you and your family A diagnosis of Hodgkin lymphoma community. researchers who are working tirelessly to when it is needed. can have a dramatic impact on a person’s life. At times it can be difficult to Each year, the Leukaemia Foundation discover safer and more effective Support Services may include: helps more than 700 families from treatments that will save lives and help cope with the emotional stress involved. regional and rural Australia by providing people lead a better quality of life. Information Leukaemia Foundation’s support staff free accommodation in our capital cities can provide you and your family with Supporters also ensure the Leukaemia The Leukaemia Foundation has a range so they can access life-saving treatment much needed support during this time. Foundation can continue to give those of free booklets, DVDs, fact sheets and at major hospitals. impacted by blood cancer a strong other resources. These can be ordered Blood Buddies voice, advocating for change and via the form at the back of this booklet or Our transport service also helps This is a program for people newly ensuring all Australians who need them downloaded from our website thousands get to and from medical diagnosed with Hodgkin lymphoma to be have easy access to the very best blood leukaemia.org.au. introduced to a trained ‘buddy’ who has cancer treatments. been living with Hodgkin lymphoma for at least two years, to share their experience, their learning, and to provide some support. I took time off work to focus on my health and wellness. It was the best thing I could have done.

Telephone discussion forums Accommodation Practical assistance Contacting us This service enables anyone throughout Some people need to relocate for The urgency and lengthy duration of The Leukaemia Foundation provides Australia who has or has had Hodgkin treatment and may need help with medical treatment can affect everyday services and support across Australia. lymphoma to share their experiences, accommodation. The Leukaemia life for you and your family and there may Every person’s experience of living with provide tips, and receive education and Foundation’s staff can help you to find be practical things the Foundation can blood cancer is different. Living with support in a relaxed forum. Each suitable accommodation close to your do to help. In special circumstances, the blood cancer is not always easy, but you discussion is facilitated by a member of hospital or treatment centre. In many Leukaemia Foundation provides financial don’t have to do it alone. the Leukaemia Foundation support team areas, the Foundation’s fully furnished support for patients who are Please call 1800 620 420 to speak to a who is a trained health professional. self-contained units and houses can experiencing financial difficulties or support staff member or to find out more provide a ‘home away from home’ for hardships as a result of their illness about the services offered by the you and your family. or its treatment. This assistance is Foundation. Alternatively, contact us 8 assessed on an individual basis. 9 Transport via email by sending a message to Advocacy [email protected] or visit The Foundation also assists with leukaemia.org.au. transporting people to and from hospital The Leukaemia Foundation is a source of for treatment. Courtesy cars and other support for you as you navigate the services are available in many areas health system. While we do not provide throughout the country. treatment recommendations, we can support you while you weigh up your options. We may also provide information on other options such as special drug access programs, and available clinical trials.

We are not alone on the journey with Hodgkin lymphoma – support is available and real, and there are many ways to connect with others, either by support group meetings, phone support, seminars run by the Leukaemia Foundation, written materials or Facebook groups. Red Blood Cells Carry oxygen for the body to produce energy

Platelets White Support blood clotting to stop Blood Cells Hodgkin Lymphoma bleeding Form part of the immune system Hodgkin lymphoma is a form of blood cancer diagnosed in Getting to over 600 Australians each year. know your bone This cancer affects cells that develop marrow, stem in the bone marrow and mature in the lymphatic system. cells and blood

10 To best understand this cancer we need 11 to understand the bone marrow, blood Bone marrow and lymphatic system. Bone marrow is the spongy You might like to think of the bone tissue that fills the cavities marrow as the blood cell factory. The main workers at the factory are the inside your bones. Most of stem cells. They are relatively small in your blood cells are made number but are able, when stimulated, to in your bone marrow. reproduce vital numbers of red cells, white cells and platelets. All blood cells The process by which blood cells are need to be replaced because they have made is called haematopoiesis. There limited life spans. are three main types of blood cells; There are two main families of stem cells, red cells, white cells and platelets. which develop into the various types of As an infant, haematopoiesis takes place blood cells. at the centre of all bones. In later life, it is limited mainly to the hips, ribs and breast Myeloid (‘my-a-loid’) stem cells develop bone (sternum). Some of you may have into red cells, white cells (neutrophils, had a bone marrow biopsy taken from eosinophils, basophils and monocytes) the bone at the back of your hip (the and platelets. iliac crest). Lymphoid (’lim-foid’) stem cells develop into other types of white cells including T-cells, B-cells and Natural Killer Cells. Blood cell formation:

Blood Stem Cells Myeloid Lymphoid Stem Cell Stem Cell Blood cells Line Line Red cells and haemoglobin Anaemia Red cells contain haemoglobin (Hb) Anaemia is a reduction in the number Red Cells White Cells Platelets B-cells T-cells which gives the blood its red colour and of red cells or low haemoglobin. transports oxygen from the lungs to all Measuring either the haematocrit or the parts of the body. The body uses this haemoglobin will provide information Neutrophils, Eosinophils, Natural Killer Cells oxygen to create energy. regarding the degree of anaemia. Basophils, Monocytes Haematocrit If you are anaemic you may feel rundown About 99% of all blood cells in circulation and weak. You may be pale and short of are red blood cells. The percentage of breath or you may tire easily because Growth factors Blood the blood that is occupied by red blood your body is not getting enough oxygen. In this situation, a red cell transfusion and cytokines Blood consists of blood cells and plasma. cells is called the haematocrit. A low haematocrit suggests that the number of may be given to restore the red blood 12 All normal blood cells have a limited Plasma is a straw-coloured fluid that cell numbers and therefore the 13 blood cells use to travel around your red cells in the blood is lower than lifespan in the circulation and need normal. haemoglobin to more normal levels. to be replaced on a continual basis. body and also contains many important This means that the bone marrow proteins and chemicals. remains very active throughout life. Normal ranges for Natural chemicals circulating in your blood called growth factors, or adults: cytokines, control this process of blood Men Women cell formation. Each of the different blood cells is produced from stem cells under Plasma the guidance of a different growth factor. 55% Haemoglobin (Hb) 130 - 170 g/L 120 - 160 g/L Some of the growth factors can now Blood Haematocrit (Hct) 40 - 52% 36 - 46% be made in the laboratory (synthesised) Cells and are available for use in people White cell count (WBC) 3.7 - 11.0 x 109/L with blood disorders. For example, 45% granulocyte colony-stimulating factor Neutrophils (neut) 2.0 - 7.5 x 109/L (G-CSF) stimulates the production of certain white cells, including Platelets (Plt) 150 - 400 x 109/L neutrophils, while erythropoietin (EPO) stimulates the production of red cells. White cells Neutropenia Children White cells, also known as leukocytes, Neutropenia is the term given to describe In children, some normal blood cell fight infection. The following is a list of a lower than normal neutrophil count. If counts vary with age (see table below). some of the different types of white cells: you have a neutrophil count of less than 1 If your child is being treated for Hodgkin (1 x 109/L), you are at an increased risk of Neutrophils: Mainly kill bacteria lymphoma you can ask your doctor or developing more frequent and sometimes and remove damaged tissue. nurse for a copy of their blood results, severe infections. Neutrophils are often called the first which should include the normal values line of defence when infections occur. Platelets for each blood type for a male or female They are often the first white blood cell child of the same age. at the site of infection and attempt to Platelets are cellular fragments that destroy the foreign pathogen before circulate in the blood and play an it becomes a problem to the body. important role in clot formation. They help to prevent bleeding. 1 month 1 year 3 years 5 years 9 years Eosinophils: Mainly kill parasites If a blood vessel is damaged (for 14 15 Basophils: Mainly work with example by a cut) the platelets gather at Haemoglobin g/L 102-130 104-132 107-137 110-139 113-143 neutrophils to fight infection the site of the injury, stick together and Monocytes: Mainly work with neutrophils form a plug to help stop the bleeding. White cell count x1012/L 6.4-12.1 5.4-13.6 4.9-12.8 4.7-12.3 4.7-12.2 and lymphocytes to fight infection; They also release chemicals, called they also act as scavengers to remove clotting factors that are required for Platelets x1012/L 270-645 205-553 214-483 205-457 187-415 dead tissue. These cells are known as the formation of blood clots. monocytes when found in the blood, and Neutrophils 0.8-4.9 1.1-6.0 1.7-6.7 1.8-7.7 1.8-7.6 Thrombocytopenia called macrophages when they migrate into body tissue to help fight infection. Thrombocytopenia is the term used to describe a reduction in the platelet B-cells: Mainly make antibodies count to below normal. If your platelet which target micro-organisms, count drops too low, you are at an particularly bacteria. increased risk of bleeding and tend T-cells: Mainly kill viruses, parasites and to bruise easily. Each treatment centre cancer cells, produce cytokines which will have their own guidelines on the I have to be mindful with can recruit other cells to make antibodies specific platelet count level when hygiene and I keep away from which target micro-organisms. interventions may need to be taken. crowds. I’ve learnt to avoid touching Platelet transfusions are sometimes my mouth, nose and eyes with my These white cells work together given to return the platelet count to fight infection as well as having unique to a safer level. hands. I wash my hands frequently to individual roles in the fight against decrease my chances of infection. infection. The Lymphatic System

The lymphatic system is made up of a vast Cervical Clusters of small bean-shaped organs lymph nodes network of lymph vessels, similar to blood called lymph nodes (also known as vessels that branch out into all the tissues lymph glands) are found at various points throughout the lymphatic system. Axillary Thymus of the body. The two main roles of the The lymph nodes, which are filled with lymph lymphatic system are: to drain excess fluid B-cells and T-Cells, act as important nodes from the body’s tissues, filter it and return it filtering stations, cleaning the lymph fluid to the blood stream; and to harbour as it passes through them. Here bacteria, viruses and other harmful substances are Spleen specialist white blood cells – lymphocytes removed and destroyed. When you have – to help fight infection. an infection, for example a sore throat, you may notice that the lymph nodes 16 17 There are two types of lymphocytes, B-cells and under your jaw bone become swollen T-cells. These cells protect us by destroying harmful and tender. This is because the B-cells Inguinal microorganisms such as bacteria and viruses. As such, and T-Cells which live there become lymph nodes the lymphatic system forms part of the immune system, activated and multiply in response to the which protects our bodies against disease virus or bacteria causing the infection. and infection.

Lymph vessel The spleen (an organ on the left side Popliteal of the abdomen), thymus (a gland found Bone marrow lymph nodes behind the breast bone), tonsils and adenoids (glands in the throat) and bone marrow (spongy material inside bones) all contain lymphatic tissue and are therefore considered to be part of the lymphatic system. Lymphatic tissue is also found in the stomach, gut and skin. With treatment, most people with What is What Is Hodgkin Hodgkin lymphoma can be cured; What causes Lymphoma? Lymphoma? this is especially true for younger Hodgkin patients who are diagnosed with early-stage disease. Patients with Lymphoma? Lymphoma is the general term When it is first diagnosed, advanced stage Hodgkin lymphoma can for cancers that develop in the Hodgkin lymphoma may affect also be treated very successfully and Many people who are lymphatic system. There are a single lymph node or a group cured in a high proportion of patients. diagnosed with lymphoma ask two main types of lymphoma: of lymph nodes or it may affect Who gets it? the question “why me?” Hodgkin lymphoma and non- another part of the body such Naturally, they want to know Hodgkin lymphoma*. as the spleen, liver or Hodgkin lymphoma can occur at any age but it is most common in adolescents what has happened or what bone marrow. There are 60 different types of non- and young adults with over a third of all they might have done to cause cases diagnosed between the ages of 15 Hodgkin lymphoma currently recognised All sub-types of classical Hodgkin their disease. and 30 years. Around 30 children (0-14 18 by the World Health Organisation’s lymphoma are distinguished from all 19 years) are diagnosed with Hodgkin The truth is that no one knows exactly classification system. There are also 5 other types of lymphoma because lymphoma each year in Australia. It is what causes Hodgkin lymphoma. different sub-types of Hodgkin of the presence, under the microscope, rare in children younger than 5 years old. We do know that it is not contagious. You lymphoma. of a special kind of cancer cell called cannot ‘catch’ Hodgkin lymphoma by a Reed-Sternberg cell. A rare type of Lymphomas originate in developing being in contact with someone who has Hodgkin lymphoma (NLPHL) is the only How common is it? B-cells and T-cells, which have it. Like many cancers, damage to special sub-type of Hodgkin lymphoma without Hodgkin lymphoma is a relatively rare undergone a malignant (cancerous) proteins which normally control the change. This means that they multiply the Reed-Sternberg cell present. disease. It accounts for around 0.5 per cent of all cancers and 10 percent of growth and division of cells may play a without any proper order forming In more advanced stages, Hodgkin all lymphomas diagnosed. Each year role in its development. tumours, which are collections of cancer lymphoma can spread via the lymphatic in Australia, around 600 people are cells. These tumours cause swelling in system and the blood, to almost any part diagnosed with Hodgkin lymphoma. the lymph nodes and other parts of the of the body. body. Over time, malignant lymphocytes Hodgkin lymphoma occurs more (called lymphoma cells) crowd out normal frequently in males than in females. lymphocytes. Eventually, the immune system becomes weakened and can no longer function properly.

* There is a separate Leukaemia Foundation booklet called ‘Understanding Non-Hodgkin lymphoma’ It was such a scary thing to be told I had cancer at my young age. There is some evidence to suggest that Other symptoms may include: people are more at risk of developing What are the Which doctor? » recurrent fevers Hodgkin lymphoma if their immune symptoms system has been weakened either » excessive sweating at night (to the If your general practitioner (GP) by a viral infection such as human of Hodgkin point where your clothing is drenched) suspects that you might have immunodeficiency virus (HIV) or as a Hodgkin lymphoma you will be Lymphoma? » unintentional weight loss result of the use of drugs which affect the referred on to other specialist function of the immune system (immune » persistent fatigue and lack of energy doctors for further tests and treatment. suppressants). These drugs are Some people do not have any These may include the following: » generalised itching or a rash commonly used when someone has a symptoms when they are first Haematologist: a doctor who heart, lung or other organ transplant. diagnosed with Hodgkin » dizziness specialises in the care of people Infection with Epstein-Barr virus (EBV), lymphoma. In these cases the These symptoms are also seen in other with diseases of the blood, bone marrow the virus that causes glandular fever, may illnesses such as viral infections. Most and immune system. be associated with the development of disease may be diagnosed people with these complaints do not Hodgkin lymphoma in some patients. whilst undergoing medical tests Oncologist: a doctor who specialises 20 have Hodgkin lymphoma. However, it is in the treatment of cancer. 21 In most cases, people who are for completely different reasons important to see your doctor if you have diagnosed with Hodgkin lymphoma have – such as wanting to travel, or any symptoms that do not go away so no family history of the disease. There commence a new job. that you can be examined and treated have been some cases however, where properly and in a timely fashion. a brother or sister also develops In others, Hodgkin lymphoma usually Hodgkin lymphoma, suggesting a rare presents as a firm, painless swelling of family genetic link to the disease. a lymph node (swollen glands), usually in As this is very rare, it is not recommended the neck, under the arms or in the groin. that families undergo testing for the It is important to remember that most disease when a family member is people who go to their doctor with diagnosed with Hodgkin lymphoma. enlarged lymph nodes do not have Hodgkin lymphoma. Swollen glands often result from an infection, for example a sore throat. In this case the glands in the neck are usually swollen and painful. A surgical or excision biopsy involves Types of Hodgkin lymphoma How is Hodgkin removing the entire swollen lymph node. Subtypes of Lymphoma You will usually need a general Hodgkin Nodular sclerosing anaesthetic for this and you will have diagnosed? a few stitches afterwards. Lymphoma » most common subtype If the swollen gland is in your abdomen » more commonly seen in young adults When you see your doctor they will likely or pelvis, a laparoscopy may be done to There are currently five different perform a full physical examination. The » usually involves the lymph glands get a sample of the lymphatic tissue sub-types of Hodgkin doctor will look and feel for any swelling of the neck and chest involved. A laparoscopy is a surgical of the glands in your neck, armpits and lymphoma recognised by the procedure in which a narrow tube with groin. Your abdomen and chest will also latest World Health Mixed cellularity a tiny camera attached, is inserted be examined for any signs of swollen through a small cut in the skin. It allows Organization’s classification organs or fluid collection. The doctor will » more commonly seen in the surgeon to see the inside of your system. also ask you about any other symptoms older people (over 50 years) abdomen or pelvis, and to take a biopsy you might have. Hodgkin lymphoma is divided into two 22 if needed. This is done under general Lymphocyte-rich 23 At this stage some blood samples anaesthetic and you will have a few main subtypes; classical Hodgkin may be taken to check how well stitches afterwards. lymphoma (of which there are four » a rare subtype with the your bone marrow, liver and kidneys subtypes accounting for 95% of Hodgkin most favourable outcome Once the tissue samples are removed, are functioning. lymphoma cases) and nodular they are examined in the laboratory by a lymphocyte-predominant Hodgkin » very few Reed-Sternberg Biopsy pathologist. A pathologist is a doctor lymphoma). In simple terms, the different cells making it challenging who is specially trained to examine subtypes are distinguished from each to diagnose correctly If the doctor suspects that you might tissue specimens and cells, to help other by the appearance of the cells have Hodgkin lymphoma, a biopsy will diagnose diseases like cancer. under the microscope. Lymphocyte depleted need to be done to help confirm the It can take a few days for the final diagnosis. A biopsy involves removing Most patients have a good response » disease tends to be more results of the biopsy to come through. a lymph node or a sample of tissue from to treatment regardless of the type of widespread at diagnosis This is because the doctors take great a suspicious lump, which is then Hodgkin lymphoma they have. A more care to make an accurate diagnosis. Nodular lymphocyte predominant examined in the laboratory. important consideration in the choice An accurate diagnosis of the exact of treatment is how widely the lymphoma There are different types of biopsies. type of disease you have is important has spread in your body. » most common in the 30-50 year A core or fine needle biopsy involves because this helps your doctor decide age group inserting a needle into a lymph node on the very best treatment for you. or lump and removing a sample of tissue. » tends to be slow growing This is usually done under local Understandably, waiting for results can » responds well to radiotherapy and anaesthetic, while you are awake. If the be a very distressing time for you and chemotherapy affected lymph node is deep inside the your family. It may help to talk about your body, the biopsy may be done with the feelings with someone you are close to help of ultrasound or specialised x-ray or feel comfortable with. (imaging) guidance. Staging tests Computerised axial tomography Magnetic resonance imaging (MRI) PET scans give a very accurate picture of (CT scan or CAT scan) MRI is another body scanning technique. the actual stage of your lymphoma and Once a diagnosis of lymphoma is made, are also used during treatment to CT scans provide computer analysed, It uses a very strong magnet and radio further tests need to be done to find determine your response. out the extent to which the disease has three dimensional (3D) images of cross waves to produce very clear and spread in your body and the effect it is sections of your body. This technology is detailed three dimensional (3D) images Bone marrow examination able to detect tiny changes in tissue of the body. An MRI may be done when having on important body organs. A bone marrow examination (biopsy) density which might indicate the the doctor needs a very clear picture of This information will help your doctor involves taking a sample of bone marrow, presence of an infection or a tumour. The the brain and spinal cord to see if these to decide on the best treatment for you. usually from the back of your iliac crest CT scan does not hurt and it usually areas are affected by cancer. Diagnostic and staging tests (hip bone) to see if there are any takes a few minutes to complete the MRI is painless and usually takes about lymphoma cells present, and to see how Biopsy scan itself. While the scan is being done » an hour to complete. The MRI scan may well your bone marrow is functioning. you have to lie flat and still on a » Blood tests make some people feel claustrophobic. cushioned table that moves slowly Speak with your doctor if you feel you It is usually done in a day procedure unit » Imaging tests: through the CT machine. The machine may experience this. Your doctor may under local anaesthesia or, in selected 24 itself looks like a giant ring surrounding cases, under a short general 25 » X-rays offer you a relaxant. the table. Sometimes a special dye anaesthetic.

♦ CT (computerized tomography) (called a contrast) is used to enhance the Positron emission A mild sedative and a pain-killer is given scans of the chest, abdomen quality of the pictures taken. The tomography (PET) scan beforehand and the skin is numbed and pelvis contrast may be either swallowed or PET scanning uses radioactive glucose using a local anaesthetic; this is given as injected into a vein in your hand or arm ♦ MRI (magnetic resonance imaging) which is injected into a vein in your hand an injection under the skin. The injection before the scan. The CT scanner or arm. You then need to rest in a dark, takes a minute or two, and you should ♦ gallium scan displays the contrast as it moves through quiet room for 60 minutes while the feel only a mild stinging sensation. the body, highlighting areas to be ♦ PET (positron emission tomography) glucose is taken up by metabolically examined more closely. active cells. Special gamma cameras are After allowing time for the local » Bone marrow examination. anaesthetic to work, a long thin needle CT scans of chest, abdomen and used to determine which areas of your is inserted through the skin and outer pelvis are often used to assess the body are affected by lymphoma. Using Blood tests layer of bone into the bone marrow spread of lymphoma in the body. this technology, slow growing Blood tests provide important lymphomas can be distinguished from cavity. A syringe is attached to the information on how well your bone The CT scan may make some fast growing ones because of the rate at end of the needle and a small sample marrow, liver and kidneys are people feel claustrophobic. Speak which the glucose is used by the of bone marrow fluid is drawn out - this functioning. These tests provide a with your doctor if you feel you different cells. The scan itself takes is called a bone marrow aspirate. may experience this. Your doctor baseline set of results regarding your about 30 minutes but you should expect A slightly larger needle may then be may offer you a relaxant. disease and general health. They can the whole process to take 2 to 3 hours. used to obtain a small core of bone then be compared with later results to You will need to fast for several hours marrow which will provide more detailed see how well you are responding to prior to a PET scan. information about the structure of the your treatment. bone marrow and bone – this is known as a bone marrow trephine. Because you might feel a bit drowsy Staging A, B or E? afterwards and the sedation can affect Each stage is described further The extent to which the lymphoma has how you think, you should be according to the symptoms you have spread in your body is called the stage of accompanied by a family member or when you are first diagnosed. If you the disease. In stages 1 and 2, lymphoma friend who can take you home. A small do not have any symptoms, the letter is limited to one or two areas of the body dressing or plaster will be placed over ‘A’ will appear after the stage of (early stage). In stages 3 and 4, the the biopsy site and this can be removed lymphoma, for example stage 2A. the next day. disease is more widespread in the body (advanced stage). If you have symptoms such as fevers, Other tests night sweats and unexplained weight Stages of lymphoma Other tests may be used to assess loss, the letter ‘B’ will be put after the your general health and the function Stage 1 stage of your lymphoma, for example stage 2B. of various organs. These tests include: lymphoma is limited to one group » chest x-ray of lymph nodes or one organ/area The letter ‘E’ is used when lymphoma 26 outside the lymph nodes has spread to an area or organ outside 27 » electrocardiogram (ECG) the lymph nodes, for example 4E. Stage 2 » heart scan – either nuclear medicine scan or echocardiogram lymphoma is limited to two groups of lymph nodes or organ/area outside » lung function tests the lymph nodes either above or below » 24-hour urine collection the diaphragm (the large muscle that separates the stomach and the chest) Stage 3 lymphoma is found in lymph nodes and/or an organ or other area both above and below the diaphragm Stage 4 lymphoma is found in lymph nodes on both sides of the diaphragm and/ or has spread outside the lymph nodes to one or more organs, for example; the bone marrow, lungs, liver and skin Prognosis disease. Finding ‘survival statistics’ Commonly used prognostic terms Partial remission online does not provide you with any Cure This term is used when the lymphoma A prognosis is an estimate of the likely context about the disease, where you fit shrinks to less than half its original size outcome of your disease. It provides within the large trajectory of outcomes This means that there is no evidence of following treatment, but there is still some guide regarding the chances of within the disease, and may have little to lymphoma and no sign of it reappearing some disease remaining in the body. curing your disease or controlling it for do with your cancer experience. It often even after many years (usually five a given time and assists the doctor in leads to unnecessary distress that could years). With effective treatment, Stable disease deciding which therapy is best for the be alleviated by speaking directly with the majority of people with Hodgkin When the lymphoma is stable and disease that you have. your doctor. lymphoma can be cured of their disease. is not getting any better or worse Your doctor is the best person to give The majority of people treated for Complete remission with treatment. you an accurate prognosis regarding Hodgkin lymphoma can be cured. your lymphoma as he or she has the This means that the treatment has Relapse Many others who are treated remain been successful and that so much of the most information to make this disease-free and well for a long time. The lymphoma has reappeared assessment. lymphoma has been destroyed that it This is also known as being in can no longer be detected using all after a period of remission. remission. If Hodgkin lymphoma comes 28 It is not a good idea to search the available tests. The length of time that Resistant or refractory disease 29 internet to try to find your own prognosis. back or relapses more treatment may be a remission lasts varies from person There are so many factors that are required to get you well again and back to person and the lymphoma may This means that the lymphoma is not unique to you that have an impact on into remission. reappear, even after a long time. responding to treatment. your prognosis. Only your own treating Because of this, regular checkups are Disease progression doctor is in a position to provide necessary while you are in remission. information on the likely course of your Where the lymphoma is getting worse, on or off treatment.

The thing I found hardest was telling my partner and my friends and family. Treatment may involve chemotherapy, Advanced-stage disease Palliative care Treatment radiotherapy, targeted or immunotherapies or a combination of Advanced-stage disease (stages 3 and If the disease cannot be cured, The treatment recommended these treatments. In selected cases that 4) is usually treated with a longer course a decision is made to control symptoms of chemotherapy. In most patients, the and not to cure. The treatments may for your Hodgkin lymphoma will do not respond to initial treatment or relapse after a period of remission, a chemotherapy will continue for 6 months still involve milder forms of anti-cancer depend mainly on the stage of stem cell transplant (also called a or even longer. Occasionally treatment (less intensive chemotherapy your disease. peripheral blood stem cell or bone radiotherapy is also used. and/or radiotherapy) for your lymphoma. marrow transplant) may be performed. If you and your doctor decide not to Other factors will also be considered Relapsed and continue with any anti-cancer treatment, including your age and general health. Early-stage disease refractory disease there are still many things that can be done to help you to stay as healthy and Information gathered from treating The great majority of people with early Rarely, Hodgkin lymphoma may come comfortable as possible for some time. thousands of other people around stage Hodgkin lymphoma (stages 1 and back after you have finished treatment Palliative care is aimed at relieving any the world who have had the same 2) are cured. There are often several (relapse) or it may not completely go symptoms or pain you might be 30 disease helps to guide your doctor in options available for your treatment away (refractory disease). The likelihood experiencing as a result of your disease 31 recommending the best treatment which your doctor should discuss with of this happening is dependent on a or its treatment, rather than trying to cure for you. you. Early-stage disease is usually number of factors including the stage of or control it. treated with a combination of your lymphoma at diagnosis. Remember however that no two people chemotherapy and radiotherapy. are the same. In helping you to make the Finding out that your disease has come Standard therapy Typically, you may receive 2-4 months of best treatment decision, your doctor will back or relapsed can be devastating. chemotherapy followed by a course of Standard therapy refers to types consider all the information available If your disease does relapse there are radiotherapy. In some patients, of treatment which are commonly including the details of your particular usually ways of trying to get it back chemotherapy alone is used for up to used. These treatments have been situation. under control. These might involve using 6 months. The decision regarding which tried and tested both in clinical trials more chemotherapy, using different of these options should be used will and through long-term clinical use, chemotherapy, radiotherapy if localised depend on your disease stage and and have been proven to be effective or using more intensive or high-dose which side effects of treatment are and reasonably safe. chemotherapy followed by a stem important to you. cell transplant. Clinical trials Informed consent Chemotherapy A course of chemotherapy for Hodgkin Clinical trials (also called research Giving an informed consent means lymphoma is usually given in several studies) test new treatments, or that the potential risks and potential Chemotherapy literally means cycles (or courses) with a rest period of administer standard treatments in a benefits of a proposed procedure or ‘therapy with chemicals’. a few (usually 2 or 3) weeks in between new way, and compare their outcomes treatment have been fully explained Many chemotherapy drugs each cycle. This is to allow the body to recover from the side-effects of to established treatments both to see if to you. You will then be asked if you are also called cytotoxics the new treatment regimen works better, are willing to comply with the chemotherapy. A typical chemotherapy and to compare the side effects. Some requirements of the trial, including (cell toxic) because they kill cells, regime for Hodgkin lymphoma might clinical trials are randomised, so that treatments, tests and the collection especially ones that multiply involve up to six to eight cycles of some patients will be receiving the of relevant information about you and quickly like cancer cells. a combination of drugs, given over new experimental treatment and others your disease. If you feel happy that you a period of several months. receive the current standard treatment. have adequate information to make such Chemotherapy usually involves a How is chemotherapy given? Clinical trials are important because a decision, you may then give combination of drugs (combination they provide vital information about how your informed consent. chemotherapy). The names of different There are many different ways of giving treatment can be improved. Clinical trials combinations of drugs are commonly chemotherapy. It may be given through 32 You should never feel compelled 33 sometimes give access to new therapies derived from the first letters of each a vein (intravenously or IV), usually in to be in a clinical trial. The decision to that have been tested elsewhere but are of the drugs used. For example the your arm or hand, or in tablet participate must always be voluntary, not yet available locally. combination ABVD (Adriamycin, form (orally). after you have received all the necessary Bleomycin, Vinblastine and If you are having several cycles of If you are considering taking part information. Even after you have agreed Dacarbazine) is commonly used to treat intravenous chemotherapy your doctor in a clinical trial make sure that you to be in a clinical trial and signed the Hodgkin lymphoma. Another called may recommend that you have a central understand the reasons for the trial consent form, you can change your mind, BEACOPP involves a combination venous catheter (also called a central and what it involves for you. You also whether or not trial treatment has already of the drugs Bleomycin, Etoposide, line) inserted. A central venous catheter need to understand the benefits and started. Adriamycin, Cyclophosphamide, is a special line inserted through the skin, risks of the trial before you can give your Procarbazine and Prednisolone. into a large vein in your arm, neck or consent. Talk to your doctor Each drug targets the cancer in chest. Once in place, chemotherapy and who can guide you in making the a different way. A combination of any other IV drugs can be given through best decision for you. chemotherapy drugs has been proven the line and blood tests can sometimes to be more effective than a single drug be taken from the line, without the need in destroying the lymphoma. for frequent needle pricks. There are several different kinds of What happens during Side-effects of chemotherapy Effects on the bone marrow central lines used; some are intended for chemotherapy? Chemotherapy kills cells that multiply As we mentioned previously, all your short-term use while others remain in You will need to attend the hospital or quickly, such as cancer cells. It also white cells, platelets and red cells place for months and even years. the chemotherapy day centre for your causes damage to fast-growing normal are made in your bone marrow. You may like to discuss with your doctor chemotherapy. How frequently that is cells, especially hair cells, and cells in Chemotherapy temporarily affects where these lines are placed on your necessary will depend on the type of your mouth, gut and bone marrow. Other the bone marrow’s ability to produce body, to minimise the visibility of long- chemotherapy which you are receiving. cells are also affected. The side-effects adequate numbers of these cells. term scarring. These lines require special of chemotherapy occur as a result of Your doctor will want to see you fairly As a result, your blood count (the care to prevent infection. damage to these normal cells. frequently during your chemotherapy. number of red cells, white cells and If necessary, the nurses at your treatment You will need blood tests between The type of side-effects and their platelets circulating in your blood) will centre will teach you how to look after chemotherapy cycles and also 1-2 days severity varies from person to generally fall within a couple of weeks of your line. prior to each treatment to make sure that person depending on the type of treatment. The length of time it takes for your bone marrow and blood counts to In most cases you do not need to be your blood count has recovered from the chemotherapy used, and how an fall and recover mainly depends on the admitted into a hospital ward for previous cycle. individual responds to it. There is no 34 doubt that side-effects can be very type of chemotherapy given. 35 overnight stay for chemotherapy for Your doctor will order some scans at the unpleasant at times but it’s helpful to Hodgkin lymphoma as it is usually given end of your chemotherapy and White cells in the outpatients’ department of the remember that most of them are sometimes also after 2-3 cycles. This is The point at which your white cell count hospital. Sometimes however, temporary and reversible. It is important to tell how well you are responding to the is at its lowest is called the nadir. This is depending on the type of chemotherapy that you report any side-effects you are chemotherapy and whether you should usually expected 10 to 14 days after being given and your general health, you experiencing to your nurse or doctor continue with the same treatment having your chemotherapy. During this may need to be admitted to the ward for because many of them can be treated or change. time you will be at a higher risk of a short while. successfully, reducing any unnecessary discomfort for you. developing an infection. A blood test may be arranged for you during this time to check your blood count. At this stage you may also be neutropenic, which means that your neutrophil count is low. Neutrophils are important white blood cells that help us to fight infection. While your white blood cell count while you are neutropenic may be very » nausea or vomiting that is prolonged is low you should take sensible serious and need to be treated with When should and prevents you from eating or precautions to help prevent infection. antibiotics as soon as possible. I contact my drinking or taking your normal These include avoiding crowds, as much medications Platelets as possible, avoiding close contact with doctor? » diarrhoea, stomach cramps people with infections which are Your platelet count may also be or severe constipation contagious (for example colds, flu, affected by the chemotherapy you It is important that you contact chicken pox) and only eating food which are receiving, and you may become your doctor or the nursing team » persistent coughing, shortness has been properly prepared and cooked thrombocytopenic (a reduction in the of breath or chest discomfort (low bacterial). Reheated food, raw fish number of platelets circulating in your for advice immediately (at any » the presence of a new rash, reddening and other raw seafood, soft cheeses blood). If your platelet count is very low time of the day or night) if you and/or itching of the skin and salad bars should be avoided. you can bruise and bleed more easily. are feeling very unwell, or if you Your doctor and nurse will advise you During this time it is helpful to avoid experience any of the following: » a persistent headache on how to reduce your risk of infection sharp objects in your mouth such as » a new severe pain or persistent while your white cell count is low. chop bones or potato chips, as these » a temperature of 38°C or higher* (even unexplained soreness 36 can cut your gums. Using a soft 37 Sometimes your doctor may decide if it returns to normal) and/or toothbrush also helps to protect your » a severe cut or other injury to use a drug like G-CSF to help the an episode of uncontrolled shivering gums. If necessary, your doctor may recovery of your neutrophil count. (also called a rigor) » persistent pain, swelling, redness prescribe a platelet transfusion to reduce This drug works by stimulating the or pus anywhere on your body the risk of bleeding until the platelet » bleeding or bruising, for example bone marrow to increase the production count recovers. blood in the urine and/or bowel * The normal body temperature of neutrophils. G-CSF is given as an motions; coughing up blood, bleeding is between 36 and 37°C injection under the skin (subcutaneous). Red cells gums or a persistent nose bleed This is quite a simple procedure and the If your red blood cell count and nurses can usually teach you or a family haemoglobin levels drop below normal member (or friend) to do this at home. levels, you will be anaemic. When you If you do develop an infection you may are anaemic you feel more tired and experience a fever which may or may not lethargic than usual. be accompanied by an episode If your haemoglobin level is very of shivering. This shivering is known low, your doctor may prescribe as a rigor and is characterised by a red blood cell transfusion. uncontrollable shaking. Infections Nausea and vomiting Changes in taste and smell Mucositis Some people believe that sucking on ice or an ice block during the Nausea and vomiting are often Both chemotherapy and radiotherapy Mucositis is an inflammation of the lining administration of chemotherapy associated with chemotherapy and can cause changes to your sense of the mouth, throat or gut and is a can help to reduce the incidence some forms of radiotherapy. These of taste and smell. This is usually common and uncomfortable side-effect of mouth ulcers – ask your treatment days however, thanks to significant temporary but in some cases it lasts up of chemotherapy, and some forms of centre about this option. improvements in anti-sickness (anti- to several months. During this time you radiotherapy. It usually starts about a emetic) drugs, nausea and vomiting are may not be able to enjoy the foods and week after the treatment has finished Occasionally mouth pain or mouth ulcers generally very well controlled. You will drinks that you used to love and this can and goes away once your blood count may develop as a result of infection e.g. be given anti-sickness drugs before your be very disappointing, but it will pass. recovers (usually a couple of weeks thrush (Candida albicans), cold sores treatment, and for a few days after each Some people find that adding a little later). During this time your mouth and (Herpes simplex). These need specific treatment cycle. Be sure to tell the more sugar to sweet foods and salt throat could get quite sore. Soluble treatment which will be prescribed by nurses and doctors if the anti-emetics to savoury foods can help. paracetamol and other topical drugs your doctor. are not working for you and you still feel (ones which can be applied to the sore sick. There are many different types of area) can help. If the pain becomes more 38 anti-emetics that can be tried. A mild severe, stronger pain killers might be 39 sedative may also be used to help stop needed. Ask your doctor or nurse you feeling sick. This will help you to for help if mucositis is bothering you. relax but it might make you a little sleepy. It is important to keep your mouth as Some people find that eating smaller clean as possible while you are having meals more frequently during the day, treatment to help prevent infection. It is rather than a few large meals, helps to particularly important to perform mouth reduce nausea and vomiting. Many find care regularly while your mouth is sore. that eating cool or cold food is more Your nurse will show you how to care for palatable, for example jelly or custard. your mouth during this time. This may Drinking ginger ale or soda water and include using a soft toothbrush and eating dry toast may also help if you are mild toothpaste. Avoid commercial feeling sick. Getting plenty of fresh air, mouthwashes, like the ones you can buy avoiding strong or offensive smells, and at the supermarket. These are often too taking the prescribed anti-sickness strong, or they may contain alcohol drugs as recommended by the nurse which will hurt your mouth. and doctor should also help. Share the burden so others can help you carry it and build you up when you don’t feel strong. Bowel changes Hair loss and skin cancers). Remember that without your hair, your head can Chemotherapy can cause damage to the For most of us, the thought of losing get quite cold, so a beanie might be lining of your bowel wall. This can lead to our hair is very frightening. Hair loss useful, especially if you are in an cramping, wind, abdominal swelling and is unfortunately a very common side- air-conditioned environment like constipation or diarrhoea. Be sure to tell effect of chemotherapy and some forms a hospital. Hair can also be lost from your the nurses and doctors if you experience of radiotherapy. It is, however, usually face and body. any of these symptoms. If you develop only temporary. The hair starts to fall out diarrhoea, a specimen will be required within a couple of weeks of treatment Look Good...Feel Better from you to ensure that the diarrhoea is and tends to grow back three to six not the result of an infection. After this months later. In the meantime there are A free community service that runs you will be given some medication to lots of things that you can do to make programs on how to manage the help stop the diarrhoea and/or the yourself feel more comfortable. appearance-related side effects of discomfort you may be feeling. cancer treatments. Avoiding the use of heat or chemicals It is also important to tell the nurse and only using a soft hair-brush and a You might like to visit their website at 40 or doctor if you are constipated or mild baby shampoo can help reduce the lgfb.org.au or call them on 41 if you are feeling any discomfort or itchiness and scalp tenderness which 1800 650 960. tenderness around your anus when you can occur while you are losing your hair. Fatigue are trying to move your bowels. People When drying your hair, pat it gently rather may have a flare up of haemorrhoids than rubbing it with a towel. Some Most people experience some degree after chemotherapy. You may need people find it more comfortable to simply of tiredness in the days and weeks a gentle laxative to help soften your have a short hair cut when they notice following treatment. Having plenty of rest bowel motion. that their hair is starting to fall out. and light exercise each day may help to make you feel better during this time. You need to avoid direct sunlight on your Getting out into the fresh air and doing exposed head (by wearing a hat some gentle exercise is important for or similar head covering), because your general feeling of wellbeing and it chemotherapy (and radiotherapy) makes also may help to reduce your fatigue. It is your skin even more vulnerable to the also important to listen to your body and damaging effects of the sun (i.e. sunburn rest when you are tired.

My company was very good to me and allowed me to work from home, encouraging and supporting me constantly. Radiotherapy What is involved in radiotherapy? Side-effects of radiotherapy Parotitis Radiotherapy uses high energy x-rays to Before you start radiotherapy, Radiotherapy can cause similar Parotitis is an inflammation of the saliva- kill cancer cells and shrink tumours. the radiation-oncologist (doctor side-effects to those caused by producing glands in the mouth which can Radiotherapy is regarded as local who specialises in treating people with chemotherapy including nausea and occur if these glands are within the therapy because it only destroys radiotherapy) will carefully calculate the vomiting, increased sun sensitivity treatment field used. These include the cancer cells in the treated area. correct dose of radiation therapy for you. (on the site radiated), hair loss and parotid or submandibular glands which The areas of your body that need to be fatigue. In general, however, the side- are situated at the top of the jaw line, The radiation field is the area of the body treated may be marked with tiny ink dots effects experienced with radiotherapy in front of the ears. Parotitis causes which is being treated and varies from on your skin using a special pen. depend on the area of the body which dryness of the mouth and jaw pain which person to person depending has been treated. For example, Radiotherapy is usually given in small usually settles down within a few days on the site of their disease. Common radiotherapy to the abdomen is more doses (also known as fractions) each once the inflammation subsides. radiation fields may include lymph nodes likely to cause nausea and vomiting weekday (Monday to Friday) over a few in the neck, chest, armpit, abdomen, while hair loss is confined to the areas of weeks. It is given in the radiotherapy groin or the spleen. the body being treated. department of the hospital, and while 42 you do not need to be admitted Skin reactions 43 to hospital as an inpatient for this Radiotherapy can cause a reddening treatment, you may need to organise of the skin, which may also flake and some accommodation for this time, become itchy. The nursing staff at the if you live a long way from the hospital. radiotherapy department will advise you The social worker or nurses can assist on how to care for your skin while you you with this. are having treatment. Gentle washing When you are having radiotherapy you (avoiding perfumed products like usually lie on a table underneath the scented soaps) and drying your skin by radiotherapy machine which delivers patting rather than rubbing is often the planned dose of radiation. Important recommended. You should also avoid structures like your heart and lungs are any creams or moisturisers that contain shielded as much as possible to ensure traces of metals. Check with the that they are not affected by the radiotherapy staff if you are unsure. Also, treatment given. Radiotherapy is you should avoid direct sunlight on any painless; in fact you do not see or feel area of skin that has received anything during the actual treatment. radiotherapy, even after the therapy You will however, need to stay perfectly has finished. still for a few minutes while the treatment is taking place. You might like to take along some music to help you relax. Fertility Protecting your fertility – Men Protecting your fertility – Women Menopause Some types of chemotherapy and Sperm banking is a relatively simple There are several approaches that may The onset of menopause in these radiotherapy may cause a temporary procedure whereby the male produces a be used to protect a woman’s fertility. circumstances can be sudden and or permanent reduction in your fertility. It semen sample, which is then stored at a These are outlined below. understandably, very distressing. is very important that you discuss any very low temperature (cryopreserved), Embryo storage – this involves It is important to discuss the possibility questions or concerns you might have with the intention of using it to achieve a collecting your eggs, usually after having of an early menopause with your doctors regarding your future fertility with your pregnancy in the future. You should drugs to stimulate your ovaries to before your treatment has begun. doctor. It is best to have this discussion discuss sperm banking with your doctor produce a number of eggs, so that more Medications may be prescribed that with your doctor before you commence before starting any treatment that might than one egg can be collected. This may help prevent an early menopause your treatment. impact on your fertility. In some cases process takes some time. and reduce your symptoms. the individual may not be a suitable In women, some types of chemotherapy Once they are collected they are candidate for sperm banking when they Hormone changes can lead to many and radiotherapy can cause varying then fertilised with your partner’s sperm are first diagnosed because they are too of the classic symptoms of menopause degrees of damage to the normal and stored to be used at a later date. ill and therefore unable to produce the including menstrual changes, hot functioning of their ovaries. In some 44 sperm in sufficient quantity or quality. Egg Storage: your unfertilised eggs flushes, sweating, dry skin, vaginal 45 cases this leads to menopause (change can also be collected and stored in dryness and itchiness, headache and of life) earlier than expected. In men, If possible, semen should be collected a similar manner. other aches and pains. Some women sperm production can be impaired for on more than one occasion. It is experience decreased sexual drive, Ovarian tissue storage – this involves a while but the production of new sperm important to realise that there are many anxiety and even depressive symptoms the removal and storage, at a very low may become normal again in the future. factors that can affect the quality and during this time. It is important that you temperature, of some ovarian tissue quantity of sperm collected in a semen discuss any changes to your periods with There are some options for preserving (cryopreservation). It is hoped that, at a specimen and its viability after it is your doctor or nurse. He or she may be your fertility, if necessary, while you later date, the eggs contained in this thawed out. There is no guarantee that able to advise you, or refer you on to a are having treatment for Hodgkin tissue can be matured, fertilised and you and your partner (or future partner) specialist doctor (a gynaecologist) or lymphoma. These are described below. used to achieve a pregnancy in the future. will be able to achieve a pregnancy and clinic that can suggest appropriate steps healthy baby in the future. You should It is important to reiterate that the you can take to reduce your symptoms. raise any concerns you have with your methods that are described here for doctor who can best advise you on your women are still relatively new and for fertility options. many reasons achieving a pregnancy and subsequently a baby is not guaranteed by using any of them. However, it is hoped that future research will improve your chances of having a baby. In addition, some are time consuming and costly while others may simply not be acceptable to you or your partner. Stem cell transplantation In a very small number of cases an Steroid therapy Some people may experience mood allogeneic stem cell transplant* using changes or depression. If you have For some people, very high doses of a suitably matched stem cell donor may Steroids are hormones which are a history of mental health concerns, chemotherapy or radiotherapy are be considered. Because of the risks produced naturally by the body. particularly depression, please inform needed to effectively treat their associated with this form of treatment for They can also be made in the laboratory your doctor before commencing lymphoma. It is generally only offered to Hodgkin lymphoma, it is generally only and they play an important role in the steroid therapy. patients who have relapsed or to those used in younger patients. management of lymphoma. Prednisolone for whom standard (conventional) and Dexamethasone are examples of Many of the side-effects of steroids treatment has not worked. A stem cell transplant is only offered steroids that are often given as part of are temporary and should pass once you if your doctor feels that it will be of a chemotherapy regime. Steroids work in finish taking them. As a side effect of these treatments, benefit to you. this instance, by directly killing normal bone marrow and bone marrow Long-term use may cause some lymphoma cells, and reducing side stem cells are also destroyed and need * There are separate Leukaemia Foundation other effects such as fluid retention, effects such as nausea. to be replaced using an autologous stem booklets called ‘Understanding Autologous problems with blood sugar levels and an Stem Cell Transplants’ and ‘Understanding cell transplant* (also known as an increased susceptibility to infections. Allogeneic Stem Cell Transplants’, which provide Side-effects of steroid therapy autologous peripheral blood stem cell or Aching joints such as the knees and hips 46 more details on these types of treatments. 47 bone marrow transplant). This type of The types of side-effects seen with have also been reported. Remember to treatment involves collecting stem cells, steroids depend largely on how long tell your doctor and nurses about any usually from your blood stream, storing they are used for, and the dose given. side-effects you are having as they can them and then giving them back to you If you are using steroids for a short time usually suggest ways to help you. after you have received high doses you may notice that your appetite of chemotherapy. increases or you may feel more restless than usual. Some people find it more difficult to get to sleep at night and sleeping tablets or other natural therapies are sometimes recommended.

Loving life and all it has to offer, quirks and all, is what kept me going and continues to keep me going. Targeted therapy Immunotherapy Supportive Targeted therapies are special Immunotherapy is a type of targeted treatments that utilise our knowledge therapy sometimes given to treat THERAPIES about lymphomas to direct the therapy Hodgkin lymphoma. Immunotherapy more accurately to the lymphoma cells. enhances the body’s own immune Supportive care plays an Complementary therapies These therapies work by targeting system to recognise and attack the important role in the treatment Complementary therapies are therapies specific genes or proteins which are lymphoma cells more effectively. of many people with lymphoma. which are not considered standard found in the lymphoma cell or in cells One example of immunotherapy is a This involves making every medical therapies. Many people however, related to cancer growth. group of drugs known as monoclonal effort to improve your quality of find that they are helpful in coping with There are different types of targeted antibodies. Monoclonal antibodies are their treatment and recovery from therapy used in treating Hodgkin man made versions of the immune life by relieving any symptoms disease. There are many different types lymphoma and they work in different system’s proteins and can be given on you might have, and by of complementary therapies including targeted ways. These new types of their own or in combination with preventing and treating any yoga, exercise, meditation, prayer, treatments are able to modify the chemotherapy. Brentuximab is an acupuncture, relaxation and herbal and 48 complications that arise from 49 chemical pathways inside the lymphoma example of a monoclonal antibody vitamin supplements. cells in such a way that the cells are no sometimes used in the treatment of your disease or treatment. Complementary therapies should longer able to grow and they hodgkin lymphoma Blood transfusions, antibiotics, careful ‘complement’ or assist with the eventually die. Side-effects of targeted therapies attention to side-effects, psychological recommended medical treatment for Many of these targeted therapies are and immunotherapy support and appropriate use of Hodgkin lymphoma. They should not complimentary therapies are all currently only available as part of clinical Side effects vary depending on the type be used instead of, or as an alternative important elements of supportive care. trials. Your doctor will be able to discuss of therapy used. They are usually to medical treatment. It is important to with you whether one of these clinical temporary and may include flu-like realise that no complementary or trials may be an option for you. symptoms such as chills, fevers, aches alternative treatment alone has proven to and pains and weakness. Your doctor or be effective against Hodgkin lymphoma. nurse will explain any side effects you It is also important to let your doctor or might experience while you are having nurse know if you are using any these treatments and how they can be complementary or alternative therapies, managed. in case they interfere with the effectiveness of chemotherapy or other treatments you may be having. Nutrition* reasonable and safe to have sex while Body image, you are on treatment or shortly Potential late A healthy and nutritious diet is important sexuality and afterwards, but there are some effects of in helping your body to cope with your precautions you need to take. It is disease and treatment. Talk to your sexual activity recommended that you or your partner treatment doctor or nurse if you have any do not become pregnant as some of the questions about your diet or if you are treatments given might harm the considering making any radical changes It is likely that the diagnosis and Many people enjoy long and treatment of Hodgkin developing baby. Some research healthy lives after being to the way you eat. You may wish to see indicates that it may be wise not to a nutritionist or dietitian who can advise lymphoma will have some become pregnant for a minimum of 12 successfully treated for you on planning a balanced and impact on how you feel about months after chemotherapy. As such you Hodgkin lymphoma. Sometimes nutritious diet. yourself as a man or a woman need to ensure that you and your partner however, the treatment can If you are thinking about using herbs or and as a ‘sexual being‘. Hair use a suitable form of contraception. affect a person’s health for vitamins it is very important to talk this Partners are sometimes afraid that sex over with your doctor first. Some of these loss, skin changes and fatigue months or even years after it 50 can all interfere with might in some way harm the patient, has finished. 51 substances can interfere with the however this is unlikely as long as the effectiveness of chemotherapy or other feeling attractive. patient does not have a very low These are called ‘late effects’. For treatment you are having. neutrophil or platelet count at the time, Remember that most of these example, radiotherapy to the neck may * There is a separate Leukaemia Foundation the partner is free from any infections appearance changes are temporary and affect the function of the thyroid gland, booklet called ‘Eating well – A practical guide and the sex is relatively gentle. Finally, if there are small changes you can make to causing hypothyroidism (reduced thyroid for people living with leukaemias, lymphomas, you are experiencing vaginal dryness, a the way you dress or apply makeup function). Regular blood tests will monitor myeloma and related blood disorders’, which lubricant can be helpful. This will help provides more detail. which can make you feel more attractive. for this, and if the function of the thyroid prevent irritation. If you or your partner Allow yourself to get pampered; have a is found to be abnormal, steps can be have any questions or concerns massage or buy a beautiful head scarf to taken to correct it. regarding sexual activity and lift your mood. This is the time to look contraception don’t hesitate to discuss Radiotherapy to the chest and some after yourself and treat your body well. these with your doctor or nurse, or ask chemotherapy drugs occasionally During treatment, you may sometimes for a referral to a doctor or health causes heart and lung problems, experience a decrease in libido (your professional who specialises in sexual sometimes years later. Regular tests body’s sexual urge or desire), without issues. There may be a particular person can be done to monitor the function there being any obvious reason. It may in your treating team who you trust and of these organs. take some time for things to return to feel comfortable enough with to discuss ‘normal‘. If sexual intercourse is such personal issues. uncomfortable, remember that there are other pleasurable activities such as gentle touching or cuddling your partner that you can do. It is however, perfectly People who have been treated with Sometimes it is hard to remember chemotherapy and radiation therapy Making treatment everything the doctor has said. It may Information may be at a higher risk of developing decisions help to take a family member or a friend and support other diseases such as heart attacks, to your appointments with you, so they myelodysplasia (bone marrow disease) can write down the answers to your and other (secondary) cancers including Many people feel overwhelmed questions or prompt you to ask any People cope with a diagnosis of leukaemia, and melanoma (a type of skin when they are diagnosed with questions you may have forgotten to ask. Hodgkin lymphoma in different cancer). Evidence also suggests that Hodgkin lymphoma. In addition This person can be an extra set of ears ways, and there is no right or radiotherapy to the chest at a younger to this, waiting for test results or simply be there to support you. wrong or standard reaction. age may increase the chances of Your treating doctor (haematologist) will developing lung cancer or breast cancer and then having to make spend time discussing with you and your For some people, the diagnosis can later in life. decisions about proceeding family what he or she feels is the best trigger any number of emotional It is therefore important that people who with the recommended option for you. Feel free to ask as many responses ranging from denial to have had these treatments minimise treatment can be very stressful. questions as you need to, at any stage. devastation. It is not uncommon to feel angry, helpless and confused. Naturally 52 their risk of developing secondary You are involved in making important 53 cancers by avoiding ultraviolet radiation Some people do not feel that they have decisions regarding your wellbeing people fear for their own lives or that of a from the sun, by not smoking and by enough information to make such and you should feel that you have loved one. decisions while others feel overwhelmed having regular screening for enough information to do this, and that It is worth remembering that information by the amount of information they are breast cancer. the decisions made are in your can often help to take away the fear of given, or that they are being rushed into best interests. the unknown. It is best for patients and After your treatment has finished, making a decision. It is important that families to speak directly to their doctor drawing up a late effects plan with your you feel you have enough information Remember, you can always request a regarding any questions they might have doctor or nurse can help you to manage about your illness and all of the treatment second opinion if you feel this will make about their disease or treatment. your late effects, and will let you know options available, so that you can make you more comfortable about the what you will need to have regularly your own decisions about which decisions being made. It can also be helpful to talk to other monitored in the future, and when. treatment to have. health professionals including social workers , psychologists or nurses who Before going to see your doctor, make a have been specially educated to take list of the questions you want to ask. It is care of people with haematological a good idea to keep a notebook or some diseases. Some people find it useful to paper and a pen handy, as many talk with other patients and family questions come to mind in the early members who understand the hours of the morning. complexity of feelings and the kinds of I am really positive about issues that are experienced by people the future. I ensure living with an illness of this nature. I am aware of what my body is telling me. My late-effects care plan makes me feel my ongoing health is being monitored. Useful internet addresses There may be a lymphoma support group near you. You may wish to contact the Leukaemia Foundation for more Leukaemia Foundation Lymphoma Coalition information. www.leukaemia.org.au www.lymphomacoalition.org If you have a psychological or American Cancer Society Lymphoma Australia psychiatric condition, please inform www.lymphoma.org.au your doctor and don’t hesitate to www.cancer.org request additional support from a Lymphoma Association UK Australian Bone Marrow mental health professional. www.lymphomas.org.uk Donor Registry Many people are concerned about the www.abmdr.org.au Lymphoma Foundation Canada social and financial impact of the www.lymphoma.ca diagnosis and treatment on their families. ClinicalTrials.gov Normal family routines are often www.clinicaltrials.gov disrupted and other members of the Lymphoma Research Foundation 54 (USA) 55 family may suddenly have to fulfil roles Leukaemia & Lymphoma Society www.lymphoma.org they are not familiar with, for example, (USA) cooking, cleaning, doing the banking and taking care of children. www.lls.org Look Good... Feel Better program www.lgfb.org.au There is a variety of programs designed Bloodwise (UK) to help ease the emotional and financial www.bloodwise.org.uk National Cancer Institute (USA) strain created by cancer. Cancer Council of Australia www.cancer.gov/cancerinfo The Leukaemia Foundation is here to www.cancer.org.au provide you and your family with Redkite – Practical support for information and support to help you CanTeen – The Australian young people with cancer cope during this time. Contact details for Organisation for Young www.redkite.org.au the Leukaemia Foundation are provided People living with Cancer on the back of this booklet. www.canteen.org.au Leukaemia Foundation Facebook group for lymphoma patients www.facebook.com/groups/LymphomaLFAA/ known as a tumour. Not all tumours are Complete remission due to cancer; in which case they are Anti-cancer treatment has been Glossary of terms referred to as non-malignant or benign successful and so much of the disease tumours. has been destroyed that it can no longer be detected using current technology. Alopecia Blood count Cannula Hair loss. This is a side effect Also called a full blood count (FBC). A plastic tube which can be inserted into Computerised axial tomography (CT of some kinds of chemotherapy and A routine blood test that measures a vein to allow fluid to enter the scan or CAT scan) radiotherapy. It is usually temporary. the number and type of cells circulating bloodstream. in the blood. A specialised x-ray or imaging technique that produces a series of detailed three Anaemia Central venous catheter (CVC) dimensional (3D) images of cross B-cell A reduction in the haemoglobin level Also known as a central venous access sections of the body. in the blood. Haemoglobin normally A type of white cell (lymphocyte) device (CVAD). A line or tube passed carries oxygen to all the body’s tissues. normally involved in the production through the large veins of the arm, neck, Cure Anaemia causes tiredness, paleness and of antibodies to combat infection. chest or groin and into the central blood sometimes shortness of breath. This means that there is no evidence of circulation. It can be used for taking disease and no sign of it reappearing, Bone marrow samples of blood, giving intravenous fluids, even many years later (usually after five Antibodies The tissue found at the centre of many blood, chemotherapy and other drugs years). without the need for repeated needles. 56 Naturally produced substances in the flat or big bones of the body. The bone 57 blood, made by white blood cells called marrow contains stem cells from which Diaphragm B-lymphocytes or B-cells. Antibodies all blood cells are made. Active or red Chemotherapy A layer of muscle under the ribs, that target antigens on other substances bone marrow contains stem cells from Single drugs or combinations of drugs such as bacteria, viruses and some which all blood cells are made and in the separates the abdomen from the chest which may be used to kill and prevent and used for breathing. cancer cells and cause their destruction. adult this is found mainly in the bones the growth and division of cancer cells. making up the axial skeleton – hips, ribs, Although aimed at cancer cells, Antiemetic spine, skull and breastbone (sternum). chemotherapy can also affect rapidly Disease progression The other bones contain inactive or A drug which prevents or reduces dividing normal cells and this is Where the disease is getting worse on or (yellow) fatty marrow, which, as its name feelings of sickness. responsible for some common side- off treatment. suggests, consists mostly of fat cells. effects including hair loss and a sore mouth (mucositis). Nausea and vomiting Antigen Echocardiogram Cancer are also common, but nowadays Any substance that causes your immune A special ultrasound scan of the heart. A malignant disease characterised largely preventable with modern system to produce antibodies against it. by uncontrolled growth, division, anti-nausea medication. Most side- Electrocardiogram (ECG) accumulation and invasion into other effects from chemotherapy are Antibody tissues of abnormal cells from the temporary and reversible. Recording of the electrical activity of the A protein (also called an original site where the cancer started. heart. immunoglobulin), produced by the Cancer cells can grow and multiply to the body’s immune system when it detects extent that they eventually form a lump harmful substances, called antigens. or swelling. This is a mass of cancer cells Growth factors and cytokines Hodgkin lymphoma Low-grade lymphoma Malignancy A complex family of proteins produced A type of lymphoma – cancer of the Slow-growing lymphomas. A term applied to tumours characterised by the body to control the growth, lymphatic system. All other types of by uncontrolled growth and division of division and maturation of blood cells lymphoma come under the heading Lymph nodes or glands cells (see cancer). by the bone marrow. Some are now of non-Hodgkin lymphomas or Structures found throughout the body, for available as drugs as a result of genetic B and T-cell lymphomas. example in the neck (cervical), groin Mucositis engineering and may be used to (inguinal), armpit (axilla) and abdomen, Inflammation of the lining of the mouth stimulate normal blood cell production Hypothyroidism which contain both mature and immature and throat, which also can extend to following chemotherapy or bone marrow A reduction in the normal function of the lymphocytes. There are millions of very the lining of the whole of the gastro- or peripheral blood stem cell thyroid gland. small lymph glands in all organs of the intestinal tract (stomach and intestines). transplantation. body. Immune system Neutropenia Haematologist The body’s defence system against Lymphatic system A reduction in the number of circulating A doctor who specialises in the diagnosis infection and disease. A vast network of lymphnodes, neutrophils; an important type of white and treatment of diseases connected by ducts, similar to blood blood cell. Neutropenia is associated of the blood, bone marrow and vessels, that branch out into all the with an increased risk of infection. immune system. Immunocompromised tissues of the body. These ducts carry When someone has decreased lymph, a colourless watery fluid that immune function. Neutrophils Haematopoiesis transport lymphocytes, specialised white 58 Neutrophils are the most common type 59 The formation of blood cells. cells that protect us against disease and of white blood cell. They are needed to Immune suppression infection. The lymphatic system is part mount an effective fight against infection, The use of drugs to reduce the of the body’s immune system. Hickman catheter especially bacteria and fungi. function of the immune system. A type of central venous catheter Lymphocytes used for patients undergoing intensive Non-Hodgkin lymphomas treatment such as bone marrow or Leukaemia Specialised white blood cells involved in Also known as B and T-cell lymphomas. peripheral blood cell transplantation. It A cancer of the blood and bone defending the body against disease and The name historically used to describe a may have a single, double or triple tube marrow characterised by the infection. There are different types of group of lymphomas (cancers of the (or lumen). widespread, uncontrolled production lymphocytes including: B-cells, T-cells lymphatic system) that differ in important of large numbers of abnormal blood and Natural Killer Cells. ways from Hodgkin lymphomas. Non- cells. These cells take over the bone High dose therapy Hodgkin lymphomas can be slow marrow often causing a fall in blood The use of higher than normal doses of Lymphomas growing (low grade), or fast growing counts. If they spill out into the chemotherapy to kill off resistant and/or General name given to cancers of the (intermediate or high-grade) and may be bloodstream however they can cause residual (left over) cancer cells that have lymphatic system. treated in a variety of ways. very high abnormal white cell counts. survived standard-dose therapy. Magnetic resonance imaging (MRI) Oncologist Localised disease High-grade lymphomas A body scanning technique which uses a General term used for a specialist doctor Disease that is confined to a small area or Fast-growing lymphomas. very strong magnet and radio waves to who treats cancer by different means, areas in the body. produce very clear and detailed three e.g. medical, radiation, dimensional (3D) images of internal surgical oncologist. organs and structures. Partial remission Radiation field Stage Thymus The tumour shrinks to less than half The area of the body being treated with The extent or spread of disease in the A gland found behind the breast bone its original size following treatment. radiotherapy. body. (sternum) involved in the maturation of T-lymphocytes (T-cells). Pathologist Relapse Staging A doctor who specialises in the The return of the original disease after a An assessment of the extent Tumour laboratory diagnosis of disease, period of remission. or spread of disease in the body. An abnormal mass of cells which and how disease is affecting the may be non-malignant (benign) organs of the body. Resistant or refractory disease Standard therapy or malignant (cancerous). This means that the disease The most effective and safest PICC line is not responding to treatment. therapy currently being used. Ultrasound Peripherally inserted central venous Pictures of the body’s internal organs catheter (see central venous catheter) Remission (or complete remission) Stem cells built up from the interpretation of inserted in the middle of the forearm. reflected sound waves. When there is no evidence of disease Stem cells are primitive blood cells that PICCs are sometimes used for people detectable in the body; note this is not can give rise to more than one cell type. having chemotherapy. always equivalent to a cure as relapse There are many different types of stem White blood cells (White cells) may still occur. cell in the body. Bone marrow stem cells Specialised cells of the immune system Positron emission tomography (PET) have the ability to grow and produce all that protect the body against infection. 60 61 A special type of x-ray or imaging Spleen the different blood cells including red There are five main types of white blood technique capable of distinguishing cells, white cells and platelets. cells: neutrophils, eosinophils, basophils, An organ that accumulates lymphocytes, between normal tissue and areas of monocytes and lymphocytes. acts as a reservoir for red cells for cancer deep in the body. It uses a emergencies, and destroys blood cells at Stem cell transplant radioactive tracer molecule (usually the end of their lifespan. The spleen is (peripheral blood stem cell X-ray glucose), which is taken up by highly found high in the abdomen on the left- or bone marrow transplant) A form of radiation used metabolically active cells, such as the hand side. in diagnosis and treatment. brain, heart and aggressive cancers. These treatments are used to support It cannot normally be felt on examination the use of high-dose chemotherapy unless it is enlarged. and / or radiotherapy in the treatment Prognosis of a wide range of blood cancers An estimate of the likely course of a It is often enlarged in diseases of the including leukaemias, lymphomas, disease. blood – this is known as splenomegaly. myeloma, certain solid tumours, and other serious diseases. Radiotherapy (radiation therapy) Splenomegaly The use of high energy x-rays to kill Another term used to describe an T-cell cancer cells and shrink tumours. enlarged spleen. A type of white cell (lymphocyte) involved in controlling immune reactions. Stable disease When the disease is stable it is not getting significantly better or worse with treatment. Notes Notes

62 63 Notes Making a donation The Leukaemia Foundation is the only national charity dedicated to helping those with leukaemia, lymphoma, myeloma and related blood disorders survive and then live a better quality of life. It exists only because of the generous and ongoing support of the Australian community.

How can I give? ONLINE leukaemia.org.au PHONE 1800 620 420 POST (complete this form or enclose cheque/money order and return) The Leukaemia Foundation, Reply Paid 9954 in your capital city

Name

Address

Postcode

Phone Mobile

64 65 Email

I enclose my gift of (please tick box)

$30 $50 $75 $100 $250 Other $

I wish to make a regular Commencing on / / * monthly donation of $ *You can cancel at any time by calling 1800 620 420.

My cheque/money order made payable to the Leukaemia Foundation is enclosed. I wish to pay with my credit card and my details are included below: Visa MasterCard Amex Card Number

Expiry Date / CVV

Cardholder’s Name

Signature

Your privacy is important to us. That is why we treat your personal information with confidence. To learn more about how and why we collect and use any personal or sensitive information about you, please view our Notification Statement at www.leukaemia.org.au/privacy Please send me a copy of the following booklets:

Leukaemia, Lymphoma, Myeloma, Autologous Stem Cell Transplants MDS, MPN and related blood disorders Young Adults with a Blood Cancer Acute Lymphoblastic Leukaemia in Adults (ALL) My Haematology Diary Acute Lymphoblastic Leukaemia in Children (ALL) Books for children: Tom has Lymphoma Acute Myeloid Leukaemia (AML) Amyloidosis Joe has Leukaemia Chronic Lymphocytic Leukaemia (CLL) Ben’s Stem Cell Transplant Chronic Myeloid Leukaemia (CML) Jess’ Stem Cell Donation Hodgkin Lymphoma Or information about: Non-Hodgkin Lymphoma (NHL) The Leukaemia Foundation’s

Myelodysplastic Syndrome (MDS) Support Services Myeloma Workplace Giving Myeloproliferative Neoplasms (MPN) 66 Monthly giving program Eating Well National fundraising campaigns Living with Leukaemia, Lymphoma, Myeloma, MDS, MPN and related Volunteering blood disorders Receiving our newsletters Allogeneic Stem Cell Transplants (also called Bone Marrow Transplants) Leaving a gift in my will

Name

Address

Postcode

Phone Mobile

Email

POST TO The Leukaemia Foundation, Reply Paid 9954 in your capital city

PHONE 1800 620 420 EMAIL [email protected]

FURTHER INFORMATION ONLINE leukaemia.org.au This information booklet is produced by the Leukaemia Foundation and is one in a series on leukaemia, lymphoma, myeloma, MDS, MPN and related blood disorders. Copies of this booklet can be obtained from the Leukaemia Foundation by contacting us. The Leukaemia Foundation is a not-for-profit organisation that depends on donations and support from the community. Please support the Leukaemia Foundation today. February 2018

Contact us

1800 620 420

GPO Box 9954, IN YOUR CAPITAL CITY [email protected] leukaemia.org.au