the leukaemia foundation of Queensland support services division presents Lymphoma News Caring for patients and their families living with lymphoma | Issue 1 2008 in this amy’s story issue... In 2006, I was sixteen and a half years old and excitedly starting my mouth care for final year of high school. A few lymphoma patients weeks in, however, I started feeling page 2 - 3 sick, run down and losing weight. I consulted a couple of doctors who told me I simply had pneumonia. They prescribed antibiotics but when I didn’t seem to be getting any better I went to see a third doctor. This doctor did three blood tests over three weeks and a chest x-ray and finally he told us his suspicion, lymphoma. amy meets Bronco’s captain darren lockyer, when she was first diagnosed with lymphoma in 2006. hodgkin lymphoma page 4 - 5 I was admitted to Nambour General Hospital on the afternoon of March 31, 2006, going straight from the medical centre to the hospital. By Sunday morning I was in the car on my way to Royal Brisbane Hospital. It all happened so fast. My grandparents came to take care of my younger brother and sister, my bags were packed, and in no time at all my residence was the cancer ward. I had a bone marrow aspirate, biopsy, and a portacath inserted in less than a week, and then played the waiting game - waiting for the specific diagnosis, waiting to start treatment, waiting to get out of hospital. Finally, the doctors came round with the news. It was Hodgkin’s lymphoma. For the next six months I was to have chemotherapy fortnightly, which meant traveling from my what happens if hometown, the Sunshine Coast, to Brisbane. This got to be quite tiring and expensive. I also treatment gets delayed got extremely sick with nausea throughout this treatment and was forced to postpone my page 6 studies, making me miss my school friends tremendously. In November 2006, I began my twenty lots of radiation. This month I was meant to graduate and, luckily enough I had radiation in the morning, got ready and made my way to the ceremony. I, of course, didn’t graduate but to spend that night with the Class of 2006 was wonderful. In April of 2007 the doctors concluded that I was now in remission. I started my part time job again and went back to school to continue my studies. I turned eighteen, hosting a big party for my old and new school friends and had a fantastic time. fundraising update page 7 Routine check-ups have become a regular part of my life. Thanks to a routine check-up in October 2007, my doctors found that I had relapsed. I was distraught and couldn’t believe that it was happening all over again. I was just two months off graduating. I spent three weeks in hospital having chemo and, on the day before my graduation, my stem cells were harvested. The next morning, on graduation day, I made it home with only about two hours to spare. It was a huge relief just to make it home, let alone to graduation. continued on page 5 mouth Care for from lymphoma patients Information from lymphoma UK infosheets the editor introduction Good mouth care is important at all times to help ensure that your mouth is kept clean, moist and free from Welcome to our first edition of Lymphoma News infections. However, when you have lymphoma it is for 2008. Best wishes for the year ahead and I essential to be extra vigilant with your mouth care as you hope it is filled with health and good times with may be more prone to a variety of problems including a the ones you love. sore or inflamed mouth, infections, bleeding gums and a dry mouth. It has been a busy start to the year for us here, organising session topics for the Lymphoma what are the causes of mouth problems? Luncheon series and confirming the guest speakers. When you have lymphoma you may have a weakened The final page of the newsletter gives luncheon immune system – both because of the disease itself and dates, please also refer to the specific session also as a result of some of the common treatments (e.g. brochures for further details. Please ensure that chemotherapy and steroids). This can mean that you are you RSVP for the sessions to our Support Service at an increased risk of picking up frequent or recurring division for catering purposes and also, in the infections. Common mouth infections include the fungal unforeseen event that we have to postpone events, infection known as thrush (or candidosis) and the viral we can contact you to let you know. infection herpes simplex (which often results in cold sores). Some of the chemotherapy drugs used in the treatment We have an exciting year ahead with our seminar of myeloma can cause a variety of mouth problems, series. Our first luncheon in March featured especially inflammation or ulceration of the lining of the guest speaker Diana Moore, a Clinical Practice mouth (known as mucositis). This is because chemotherapy Nurse from the Mater Private Hospital who attacks the rapidly dividing cells throughout the body, spoke on Stem Cell Transplantation: Making an such as those in the lining of the mouth. Mucositis can Informed Treatment Choice. Diana’s extensive be extremely painful and can, especially after high dose working history in the haematological setting and chemotherapy and stem cell transplantation, make eating experience of caring for both the patients and and drinking very difficult. their carers throughout this treatment ensured that this session examined the process from all angles. Some lymphoma treatments can, temporarily, lower your Those who attended were very impressed with platelet count. As a result of this you may notice that you Diana’s ability to cover the topic so thoroughly in bleed more easily – especially from your gums or the an easy to understand way. corner of your mouth. This can sometimes lead to painful cracks around your mouth. Another common side effect We look forward to seeing you all throughout the is a dry mouth as many drugs can interfere with saliva year, either at one of our official events or in a more production. Though unpleasant and uncomfortable, it is personal setting. I would also like to remind you worth remembering that most mouth problems are usually that our team is here to offer support to the patient a temporary and very treatable complication of lymphoma as well as their loved ones and carers. If you have or its treatment. any feedback or suggestions on our newsletters, luncheons or services please ensure you let us what to look out for know so we can continue to meet your needs. I It is a good idea to get into the habit of inspecting your hope you enjoy this edition of Lymphoma News mouth every day so that you can detect any visible where we have featured Hodgkin lymphoma. changes. To do this you will need to look closely at your gums, your tongue and the lining of your mouth. Let your Kathryn Huntley doctor, or nurse, know if you are experiencing any of the Support Services Coordinator following: Leukaemia Foundation of Queensland • Unusual dryness of the mouth • Redness or swelling of the tongue, lips, gums or the lining of the mouth • Gums that bleed easily or are inflamed • Sores on the lips or at the corners of the mouth • Mouth ulcers • Altered taste or sensation in mouth • White plaques coating the tongue and the lining of the mouth – this may indicate oral thrush • Pain or numbness in the jaw or surrounding area • Loose or damaged teeth mouthcare treatments available It is important to inform your doctor or nurse as soon as you notice any changes to your mouth so the appropriate treatment can be prescribed. Treatments may include: • Antibacterial mouthwash – to reduce the risk of infections • Anaesthetic mouthwash – to relieve pain • Antiviral medication – to treat, or prevent, cold sores • Antifungal lozenges, drops or mouthwash – to treat and prevent oral thrush • Artificial saliva spray – to help relieve the discomfort of a dry mouth • Pain killers (e.g. codeine or morphine) may sometimes be required (often in liquid form or via a syringe driver) for severe mucositis. Try to get into a routine with your mouth care and ensure you comply with any treatment your doctor has given you. Coping with a sore, dry If your mouth is sore, ensure you take painkillers or an or infected mouth anaesthetic mouthwash before you eat. • Take painkillers regularly throughout the day – do not If you do need any invasive dental treatment, it is important wait until you are in pain. your dentist knows about your lymphoma and any • Avoid spicy, acidic or salty foods as they can increase treatment you are receiving. It is also advisable to discuss irritation in your mouth. any proposed dental treatment with your haematologist • Avoid alcohol and tobacco as they too can irritate prior to undergoing the procedure. your mouth. • Eat soft or pureed foods or moisten foods with gravy, tips for self-management melted butter or sauces to make them easier to chew preventative measures • Try to keep drinking as much as possible – use a straw • Try to keep your mouth clean by brushing your teeth if necessary. at least twice a day. Use a soft toothbrush and only • Eat ice cubes, ice-lollies or boiled sweets – they can brush very gently around your gums. soothe a sore mouth and help with dryness • Avoid flossing your teeth unless you know that your • Avoid wearing dentures for a while if your mouth is platelet count is normal. very sore or inflamed. • Keep your mouth moist and fresh and try to drink at • Ask to be referred to a dietician if you are having least three litres of clear fluid a day. problems eating – they can prescribe supplements to • Use vaseline or lip balm to help keep your lips moist. boost your nutritional intake. • Keep your dentures clean. • Use mouthwashes regularly as they can provide • Visit your dentist regularly, especially prior to the start temporary relief. of any new treatment. • Avoid smoking, and take alcohol only in moderation *The information in this article is not meant to replace the advice of • Inspect your mouth daily and inform your doctor or your medical team. They are the people to ask if you have questions nurse of any changes. about your individual situation. Lymphoma News hodgkin lymphoma extract from understanding Lymphomas - A guide for patients and families. Booklets are available from the Leukaemia Foundation. What Are Lymphomas? What causes Hodgkin lymphoma? Lymphoma is the general term for cancers that develop in Many people who are diagnosed with lymphoma ask the the lymphatic system. Lymphomas originate in developing question “why me?” Naturally, they want to know what B–lymphocytes and T-lymphocytes, which have undergone has happened or what they might have done to cause a malignant change. This means that they multiply without their disease. The truth is that no one knows exactly what any proper order forming tumours, which are collections causes Hodgkin lymphoma. We do know that it is not of cancer cells. These tumours cause swelling in the lymph contagious. You cannot ‘catch’ Hodgkin lymphoma by nodes and other parts of the body. Over time, malignant being in contact with someone who has it. Like many lymphocytes (called lymphoma cells) crowd out normal cancers, damage to special proteins which normally lymphocytes. Eventually, the immune system becomes control the growth and division of cells may play a role in weakened and can no longer function properly. its development. There are 35 different types of lymphoma currently There is some evidence to suggest that people are more recognised by the World Health Organisation’s at risk of developing Hodgkin lymphoma if their immune classification system for lymphoma. Five of these sub- system has been weakened either by a viral infection types belong to a group of diseases called Hodgkin such as human immunodeficiency virus (HIV) or as a lymphoma. All other sub-types are commonly grouped result of the use of drugs which affect the function of the together and called non-Hodgkin lymphomas or B and immune system (immune suppressants). These drugs are T-cell lymphomas. commonly used when someone has a heart, lung or other organ transplant. Infection with Epstein-Barr virus (EBV), What is Hodgkin lymphoma? the virus that causes glandular fever, may put some people Hodgkin lymphoma is distinguished from all other types of at a higher risk of developing Hodgkin lymphoma. lymphoma because of the presence, under the microscope, of a special kind of cancer cell called a Reed-Sternberg In most cases, people who are diagnosed with Hodgkin cell. When it is first diagnosed, Hodgkin lymphoma may lymphoma have no family history of the disease. There affect a single lymph node or a group of lymph nodes or have been some cases however where a brother or sister it may affect another part of the body such as the spleen, also develops Hodgkin lymphoma, suggesting a rare liver or bone marrow. In more advanced stages, Hodgkin familial predisposition to the disease. This is related to lymphoma can spread via the lymphatic system and the genetic factors. blood, to almost any part of the body. What are the symptoms of Hodgkin With treatment, most people with Hodgkin lymphoma can lymphoma? be cured; this is especially true for younger patients who Some people do not have any symptoms when they are are diagnosed with early-stage disease. Advanced stage first diagnosed with Hodgkin lymphoma. In these cases Hodgkin lymphoma can also be treated very successfully. the disease may be picked up by accident, for example during a routine chest x-ray. Who gets it? Hodgkin lymphoma can occur at any age but it is most Hodgkin lymphoma usually presents as a firm, usually common in adolescents and young adults with over a painless swelling of a lymph node (swollen glands), third of all cases diagnosed between the ages of 15 and usually in the neck, under the arms or in the groin. It is 30 years. Around 25 children (0-14 years) are diagnosed important to remember that most people who go to their with Hodgkin lymphoma each year. doctor with enlarged lymph nodes do not have Hodgkin lymphoma. Swollen glands often result from an infection, How common is it? for example a sore throat. In this case the glands in the Hodgkin lymphoma is a relatively rare disease. It accounts neck are usually swollen and painful. for around 0.5 per cent of all cancers and 10 per cent of all lymphomas diagnosed. Each year in Australia, around other symptoms may include: 400 people are diagnosed with Hodgkin lymphoma. • recurrent fevers Hodgkin lymphoma occurs more frequently in males than • excessive sweating at night in females • unintentional weight loss • persistent fatigue and lack of energy A surgical or excision biopsy involves removing the entire • generalised itching or a rash swollen lymph node. You will need a general anaesthetic for this and you will have a few stitches afterwards. These symptoms are also seen in other illnesses such as viral infections. So, most people with these complaints do If the swollen gland is in your abdomen or pelvis, a not have Hodgkin lymphoma. However it is important to laparoscopy may be done to get a sample of the lymphatic see your doctor if you have any symptoms that do not go tissue involved. A laparoscopy is a surgical procedure away so that you can be examined and treated properly. in which a narrow tube with a tiny microscope attached is inserted through a small cut in the skin. It allows the surgeon to see the inside of your abdomen or pelvis, and Which doctor? to take a biopsy if needed. This is done under general If your general practitioner (GP) suspects that you might anaesthetic and you will have a few stitches afterwards. have Hodgkin lymphoma you will be referred on to other specialist doctors for further tests and treatment. These Once the tissue samples are removed, they are examined may include the following: in the laboratory by a pathologist. A pathologist is a doctor who is specially trained to examine tissue specimens and Haematologist: a doctor who specialises in the care of cells, to help diagnose diseases like cancer. people with diseases of the blood, bone marrow and immune system. It can take a few days for the final results of the biopsy to come through. This is because the doctors take great care Oncologist: a doctor who specialises in the treatment of to make an accurate diagnosis. An accurate diagnosis of cancer. A medical oncologist specialises in chemotherapy. the exact type of disease you have is important because A radiation oncologist specialises in radiotherapy and a this helps your doctor decide on the very best treatment surgical oncologist specialises in surgery. for you. How is Hodgkin lymphoma diagnosed Understandably, waiting for results can be a very When you see your doctor, the first thing he or she will distressing time for you and your family. It may help to do is give you a full physical examination, looking and talk about your feelings with someone you are close to or feeling for any signs of swelling of the glands in your feel comfortable with. neck, armpits and groin. Your abdomen and chest will also be examined for any signs of swollen organs or fluid collection. The doctor will also ask you about any other symptoms you might have. amy’s story. continued from page 1 At this stage some blood samples may be taken to check I had another lot of intense chemotherapy before Christmas how well your bone marrow, liver and kidneys are and in January 2008 I had a stem cell transplant, staying functioning. in hospital for another three and a half weeks. This was the toughest part of my whole ordeal. It drained me Biopsy both physically and mentally. I did hit the bottom of my If the doctor suspects that you might have Hodgkin emotional pit but I am proud of the way I pulled myself up, lymphoma, a biopsy will need to be done to help confirm stayed positive and got through it. the diagnosis. A biopsy involves removing a lymph node or a sample of tissue from a suspicious lump for examination I am currently hoping and waiting for my doctor to tell me in the laboratory. that I am again, in remission and this time, I hope it stays away forever. I am extremely grateful to all of the nurses There are different types of biopsies. A core or fine needle and doctors that took care of, and continue to take care of biopsy involves inserting a needle into a lymph node or me. I am also very thankful to the Leukemia Foundation for lump and removing a sample of tissue. This is usually helping my family through its toughest times. And finally, done under local anaesthetic, while you are awake. If the I am grateful to my family and closest friends for being affected lymph node is deep inside the body, the biopsy supportive and putting a smile on my face when I was in may be done with the help of ultrasound or specialised my darkest hours. x-ray (imaging) guidance. Lymphoma News what happens if my treatment gets delayed? dr supratik Basu, Consultant haematologist from warwick hospital, United Kingdom extract from lymphoma association United Kingdom The possible diagnosis of lymphoma brings with it (and understandably generates) a great deal of anxiety and apprehension. So it can be even more frightening if, for some reason, the treatment gets delayed. Anxiety mainly stems from the thought that any delay might adversely affect the treatment outcome. In this article I will try to explain and explore why this delay might happen and whether (based on available evidence) it might adversely affect the disease outcome. delay in starting treatment blood cells produced in the marrow, and leading to low A proportion of patients may find themselves in a situation white cell, platelet or blood counts. In medical jargon where a possible diagnosis of lymphoma has been made these drugs are called ‘myelotoxic agents’. but further information is pending before treatment can be started. This can be very frustrating as the natural logic Unless the bone marrow sufficiently recovers before the and inclination is to get the treatment started as soon as next scheduled course the chemotherapy is often delayed possible. to allow the bone marrow time to recover and blood counts to reach a safe level. In particular, levels of white cells or It is important to realize, however, that the best outcome neutrophils (which prevent serious bacterial infections) from lymphoma is critically dependent on giving the and platelets (which prevent bleeding into skin, gums and appropriate chemotherapy. Diagnosis of lymphoma can internal organs) need to recover to a safe level to receive be extremely complicated and this crucially depends on the next treatment. various factors, ie • staging (finding out which parts of the body are People often ask: involved), • does this delay affect outcome, • certain blood test results, but especially on the • can anything be done so that my treatment won’t need • histopathological variety (the category in which the to be delayed, pathologist classifies the lymphoma by observing the • if we did manage to prevent any delay in treatment, cells from the biopsy under the microscope). would this lead to any better outcome? Histopathological diagnosis is very important, as there are various subtypes of lymphoma. This subdivision involves Surprisingly the answers are not clear-cut. observing the microscopic appearance of the cells and using A national UK audit on neutropenia (low neutrophil count) various special stains; these investigations can sometimes found that such neutropaenic events occur, overall, in take time. In some cases the precise subcategory is still approximately 43% of the patients receiving chemotherapy not apparent and a panel of histopathological experts for Hodgkin’s disease (HD) or non-Hodgkin’s lymphoma may review the biopsy material, to agree on the precise (NHL). It is believed that for elderly patients receiving subtype. combination chemotherapy the incidence is even higher, more than 50%, almost approaching 60%. So this is Inevitably this will cause some delay, but it is worth obviously a very widespread problem. waiting for the precise diagnosis, as this will allow the most suitable treatment to be given with the best possible As a consequence of this predictable bone marrow outcome. suppression, a number of preventative approaches have been taken by clinicians. These include dose delay, that Your consultant will often explain if this delay is expected is increasing the interval between successive cycles of and sometimes even consider giving some sort of ‘holding’ chemotherapy or dose reduction. However, the net effect of treatment (for example some chemotherapy) if it is this approach leads to decrease in the dose intensity (DI) of appropriate. However, the type of treatment may change chemotherapy and there is some unsubstantiated evidence when the full diagnosis is made. which suggests that maintaining DI is important. delay in scheduled chemotherapy so what can we do apart from reducing Very commonly this will happen when the blood count the dose or delaying chemotherapy? is too low to administer the next course of chemotherapy One can use a ‘growth factor’ (G-CSF or granulocyte safely. Some commonly used chemotherapy drugs cause colony stimulating factor), which stimulates neutrophil bone marrow suppression, reducing the number of new Brave natalie loses her locks for wgs It was the tenth year Queenslanders were challenged to be brave and shave and they most certainly rose to the challenge with over 40, 000 shaving, colouring and waxing their hair for this year’s World’s Greatest Shave. Among the brave was Natalie James, Support Services Co-ordinator at the Clem Jones Sunland Leukaemia Foundation Village, who raised an astounding $20,000 for those living with leukaemias, lymphomas, myeloma and related blood disorders. “When women are diagnosed, one of their big concerns is losing their hair. They have no choice, so shaving my head was nothing compared to what they go through.” “I was so thrilled with the support I got. I had raised $16,000 and a patient came to me and donated the last $4000 – it was overwhelming,” Ms James said. Leukaemia Foundation of Queensland CEO, Peter Johnstone said staff and volunteers all over Queensland are now busy collecting the funds raised from the hundreds of different shave events held throughout the state. Natalie James “Although it is too early to predict how much has been raised, we are certainly on target to reach our goal of $3 million.” production, and which can be given between courses of chemotherapy as an injection just under the skin. However, we are still unsure whether the use of G-CSF in this way leads to a better outcome for patients. so where does this lead us now? Excitingly, in 2002 a German study reported that a two weekly cycle of chemotherapy, instead of conventional Doorknock Appeal 19 July – 1 August 2008 three weekly, resulted in significantly better survival of patients, particularly elderly patients with high grade NHL. Over 30,000 volunteers will be knocking on 700,000 This dose intensity and scheduling was made possible by Queensland doors to raise $1.2 million during the Leukaemia using G-CSF to support the patients. Foundation’s Doorknock Appeal. Please give generously to help find cures. This supports the notion that dose delivery and scheduling are important and may have an impact on survival. The BNLI trial for elderly patients (60 + trial) with high lavender for leukaemia, grade NHL is also looking into this question of whether lymphoma and adding G-CSF support to allow higher dose intensity results in significantly better survival. myeloma 7-13 July 2008 Current other ongoing BNLI trials for NHL and HD also make provision and recommendations for use of G-CSF The scent of lavender is set to waft especially when dose delay or reduction becomes through the streets of Queensland frequent. from 7-13 July, when the Leukaemia Foundation holds its annual Lavender for leukaemia, lymphoma and myeloma ‘take home message’ week. 1.Delay in scheduled chemotherapy is often due to inadequate recovery of white cell or platelet count from For more information on Lavender for Leukaemia or the previous cycle of treatment. to become a volunteer, please contact the Leukaemia 2.Excessive delay or dose reduction can sometimes be Foundation on 1800 804 444. avoided by use of growth factors. Lymphoma News support services seminars Brisbane Grief Brunch The following educational seminars will be held at ESA Village, 14 June 10.30am (parents) South Brisbane. For more information or to make a booking 9 August phone 07 3840 3844. 11 October Lymphoma seminars Celebration of Life Maximising lymphoma treatment: the role medicines play, Sunday 24 August Timothy Dunn (Clinical Pharmacist), Wednesday, 23 July, 11.30am A special event for family and friends to reflect and Getting my life in order following a lymphoma diagnosis, Graham celebrate the lives of those who have died from Walker (Financial Counsellor), Tania Carvalho (Solicitor) & Liz leukaemias, lymphomas, myeloma and related blood Dwyer (Centrelink), Tuesday, 12 August, 11.30 disorders in the past 12 months. World Lymphoma Day – from diagnoisis to survivorship, Dr Jason Butler and patient forum, Monday 15 September, 3pm townsville Carers Group The following educational seminars will be held (4 week course on Thursday mornings 10am) at Freemason Village, 41/100 Angus Smith Drive, The Role of the Carer – 12 June or 7 August or 2 October Douglas 4814. For more information phone 4727 Emotional roller coaster ride – 19 June or 14 August or 9 October 8000. Carer burnout – 26 June or 21 August or 16 October Strategies for coping – 3 July or 28 August or 23 October Caring for the Carer (3 week course) Taking Control Program Course 1 – 18 January, 25 January, 1 February Adapting to Change – 2 August, 9am-3pm Course 2 – 1, 11 & 18 April Course 3 – 4 June, 11 July, 18 July World Lymphoma Day - 15 September Brisbane support services townsville support services team Barbara Hartigan - Director of Support Services Angela Daly - Support Services Coordinator Dean King - Support Services Coordinator Kathryn Huntley - Support Services Coordinator Kris Murphy - Support Services Coordinator for help call... Maryanne Skarparis - Support Services Coordinator Natalie James - Support Services Coordinator Brisbane: 07 3840 3844 Pat Neely - Amyloidosis Services Coordinator Jenny Gallagher - Grant - Grief Support Services Coordinator Townsville: 07 4727 8000 Shirley Cunningham - Grief Support Services Coordinator www.leukaemia.org.au Noeleen Schulte - Support Services Administration Officer Our vision to cure and mission to care. The Leukaemia Foundation of Queensland is a not for profit organisation focused on the care and support of patients and their families living with leukaemias, lymphomas, myeloma and related blood disorders. The Foundation does this by providing emotional support, accommodation, transportation and practical assistance for patients and their families. The Leukaemia Foundation also funds research into cures and better treatments for leukaemias, lymphomas, myeloma and related blood disorders. The Leukaemia Foundation receives no direct ongoing government funding, and relies on the continuous support of individuals and corporate partners to expand its services. To find out more about the work of the Leukaemia Foundation of Queensland and how you can help, GPO Box 9954 phone 1800 620 420 or visit the Foundation’s website: www.leukaemia.org.au Brisbane QLD 4001 ph: 1800 620 420 Disclaimer: No person should rely on the If you do not wish to receive future editions of this contents of this publication without first publication please contact the Leukaemia Foundation obtaining advice from their treating specialist. Support Services Division on 07 3840 3844.
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