Late Effects of Treatment

A Guide for Patients Introduction

Your treatment can cause side effects. Some of these will occur at the time of treatment and will normally stop when treatment ends. Some of these side effects may last for a long time after treatment; these are long- term effects. Some side effects do not occur for months or even years after treatment ends; these side effects are called late effects. These late effects can be physical or emotional. Not everyone gets late effects, the risk depends on the type of treatment, the dose of treatment and the patient’s age at the time of treatment. This booklet is designed to and peer reviewed by Dr Panos provide you with information Kottaridis, Royal Free Hospital. about the late effects you may The rewrite was put together by experience, what to expect and Lisa Lovelidge and reviewed by how they may be managed. If Dr Victoria Grandage. We are also you need specific advice or are grateful to our patient reviewers, concerned about a particular Simon Walker, John Watson and late effect, please contact your Steve Colbourne and the Brighton medical team or Clinical Nurse support group. The booklet has Specialist. since been updated by our Patient Information Writer, Isabelle Leach. This booklet has been compiled by Dr Victoria Grandage (UCLH)

If you would like any information on the sources used for this booklet, please email [email protected] for a list of references.

Version 3 Printed: 10/2020 2 www.leukaemiacare.org.uk Review date: 10/2022 In this booklet

Introduction 2 In this booklet 3 About Leukaemia Care 4 A note from our patient services team 6 The different types of side effects 8 Fatigue 10 Eye, hearing and mouth changes 12 Skin and nail side effects 14 Bone and joint issues 16 Endocrine changes 18 Cognitive function effect 22 Lymphoedema 23 Lung toxicity 24 Heart toxicity 26 Kidney and liver toxicity 28 Nerve side effects 31 Secondary 32 Managing late effects 34 Glossary 38 Useful contacts and further support 43

Helpline freephone 08088 010 444 3 About Leukaemia Care

Leukaemia Care is a national charity dedicated to ensuring that people affected by blood cancer have access to the right information, advice and support.

Our services has been affected by a blood cancer. A full list of titles – both Helpline specific and general Our helpline is available 8:30am information titles – can be – 5:00pm Monday - Friday and found on our website at www. 7:00pm – 10:00pm on Thursdays leukaemiacare.org.uk/support- and Fridays. If you need someone and-information/help-and- to talk to, call 08088 010 444. resources/information-booklets/

Alternatively, you can send Support Groups a message via WhatsApp on Our nationwide support groups 07500068065 on weekdays are a chance to meet and talk 9:00am – 5:00pm. to other people who are going Nurse service through a similar experience. For more information about a We have two trained nurses on support group local to your area, hand to answer your questions go to www.leukaemiacare.org. and offer advice and support, uk/support-and-information/ whether it be through emailing support-for-you/find-a-support- [email protected] or group/ over the phone on 08088 010 444. Buddy Support Patient Information Booklets We offer one-to-one phone We have a number of patient support with volunteers who have information booklets like had blood cancer themselves this available to anyone who or been affected by it in some

4 www.leukaemiacare.org.uk way. You can speak to someone Website who knows what you are going You can access up-to-date through. For more information information on our website, on how to get a buddy call www.leukaemiacare.org.uk. 08088 010 444 or email [email protected] Campaigning and Advocacy Online Forum Leukaemia Care is involved in campaigning for patient well- Our online forum, being, NHS funding and drug www.healthunlocked.com/ and treatment availability. If you leukaemia-care, is a place would like an update on any of for people to ask questions the work we are currently doing or anonymously or to join in the want to know how to get involved, discussion with other people in a email advocacy@leukaemiacare. similar situation. org.uk Patient and carer conferences Patient magazine Our nationwide conferences Our magazine includes provide an opportunity to inspirational patient and carer ask questions and listen to stories as well as informative patient speakers and medical articles by medical professionals: professionals who can provide www.leukaemiacare.org.uk/ valuable information and support. communication-preferences/

Helpline freephone 08088 010 444 5 A note from our Patient Services team

We know that sometimes the late effects of treatment can be more difficult to manage than the illness itself. Sometimes the effects can be unexpected or more severe than you anticipated.

We are aware that many patients have lots of questions about the late effects of treatment and how to deal with them and we hope this booklet helps to answer some of them.

We have indicated the effects that are most commonly experienced by patients and not all late effects feature in this booklet. This does not mean that what you are experiencing is not related to your illness or treatment, so if you are at all worried, please speak to your medical team.

If you have any questions about the information in this booklet or you want to know where you can get more information, please call us on 08088 010 444, where a member of the Patient Services team or a dedicated trained volunteer will be ready to answer your questions.

Best wishes,

The Patient Services Team

6 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 7 The different types of side effects

Most of the treatments used late side effect. for patients with leukaemia Long-term side effects: Side (, chemo • effects that are permanent and immunotherapies, radiotherapy remain long after treatment and stem cell transplants) can is finished. The development cause side effects. However, not of lung fibrosis 10 years after everyone experiences side effects treatment is an of example of a with treatment since people react long-term side effect. differently, and some patients do not have any side effects at all. Acute side effects of Side effects from treatment may treatments for leukaemia be acute, late or long-term. and have been discussed in are distinguished as followed: our booklet Common Side • Acute side effects: Side Effects of Treatment. You effects that occur during and can download a copy of the immediately after treatment. booklet from our website Most side effects are short-lived at www.leukaemiacare. and reversible, disappearing org.uk or request a copy after treatment ends. For by emailing support@ example, nausea and hair loss leukaemiacare.org.uk occur at the time of receiving or calling the helpline on treatment and usually stop 08088 010 444. once the drug is stopped.

Late side effects: Side effects • In this booklet, we discuss the that occur after treatment and late side effects and long-term may continue for a certain side effects of treatment for period after treatment is leukaemia. These side effects may finished. These are also known be physical or emotional and may as delayed side effects. Bone not show up for months or years loss occurring two years after after you have finished treatment. treatment is an example of a Late and long-term side effects

8 www.leukaemiacare.org.uk Helpline freephone 08088 010 444 8 vary from patient to patient, • Eye, hearing and mouth ranging from very mild to serious. changes Not everyone gets late effects; the Skin and nail side effects risk depends on type of treatment, • dose and age when treated. • Bone and joint issues When you receive follow-up • Endocrine and thyroid changes care, your haematologist will discuss any possible late or long- • Cognitive or thinking effects term side effects that you may • Lung toxicity experience because early medical attention often can lessen any • Heart toxicity issues that can come from late or Nerve side effects long-term side effects. • Kidney and urinary toxicity As treatments for leukaemia • have become more effective, • Secondary cancers our knowledge of late and long- term side effects has increased. Many newer treatments have been developed to reduce the number and intensity of late, and particularly long-term, side effects. Certainly, many of the treatments used now are much less likely to cause health problems than those used 20 years ago.

Possible late and long-term side effects of patients receiving cancer treatment include: • Fatigue

Helpline freephone 08088 010 444 9 Fatigue

Fatigue may be experienced adrenal-axis is the name for a during treatment, but it can also complex pathway of hormonal last for years after treatment is interactions between the finished. It is one of the most hypothalamus and pituitary common long-term side effects gland in the brain and the adrenal and is experienced by 33% of glands situated on top of the patients with acute myeloid kidneys (Figure 1). It is known leukaemia. as the central stress response system and links the central Fatigue is a tiredness or feeling nervous system and endocrine of exhaustion which leaves you system. unable to work or perform your usual activities. Fatigue can be Other more obvious causes of late experienced either physically or or long-term fatigue can include: psychologically, and can affect Ongoing pain. your ability to do everyday tasks, • as well as your mental ability. • with drugs such as vincristine, vinblastine, and The reasons why persistent cisplatin often cause fatigue fatigue occurs following through and beyond completion treatment for cancer are not yet of treatment. fully understood. It is thought that fatigue may be related to chronic • Radiotherapy can cause inflammation, an imbalance of fatigue that increases over the autonomic nervous system time, irrespective of the site (nervous system that acts largely of treatment. Fatigue usually unconsciously and regulates body lasts from three to four weeks functions such as heart rate), after treatment stops, but can damage to the mitochondria continue for up to two to three (very small organ within the cells months. of the body which create more than 90% of the energy that the • Bone marrow transplant (stem body needs) or disturbance of the cell transplant) is an aggressive hypothalamic-pituitary-adrenal- form of treatment that can axis. cause fatigue lasting for up to one year. The hypothalamic-pituitary-

10 www.leukaemiacare.org.uk Figure 1: Component of the hypothalamic-pituitary-adrenal-axis

• Stress or depression: Fatigue, enough to provide adequate stress and depression are often energy. linked and it may not be clear You should report any fatigue to as to which started first. Fatigue your medical team, so they can is one of the major symptoms of find out its cause and provide depression; however, equally, if treatment. If there is not an you feel fatigued it can lead to obvious cause for your fatigue, low mood. If you are concerned late or long-term fatigue can still about depression you should be managed successfully. discuss with your GP or treating medical team. • Medical conditions: Side effects of cancer can cause hypothyroidism meaning the thyroid gland is under-active. The body’s metabolism slows down and food isn’t burnt fast

Helpline freephone 08088 010 444 11 Eye, hearing and mouth changes

Eye changes normally have local anaesthesia and be able to go home the same Cataracts day. Cataracts are areas of clouding of Dry eye syndrome the lens of the eye that interfere with light passing through it. Dry eyes is a common condition Cataracts generally cause blurred which results from inflammation vision, sensitivity to light and of the cornea, which is the clear glare. It may also cause double outer surface of the eye, and the vision and poor vision at night. conjunctiva (membrane covering Cataracts are recognised side the eye and eyelids). This leads to effects of cancer treatment. reduced tear production. However, they also occur with Certain cancer treatments may age in people who have not been predispose to the development of treated with cancer treatment. dry eye, especially radiotherapy. Chemotherapy, hormone therapy, Graft-versus-host disease, which immunotherapy, radiotherapy can occur after a stem cell and steroid drugs can all lead to transplant, can affect any part an increased risk of cataracts. of the eye, but typically causes The risk of cataract formation inflammation of the conjunctiva in patients with radiotherapy and tear glands. increases in line with the Dry eyes are also more prone radiation dose. to eye infection. Symptoms Not all cataracts need treatment of dry eye include dry gritty and it may be that you just eyes, pain, light sensitivity and require monitoring by an optician excessive watering of your eyes. in the first instance. If treatment Treatments include artificial becomes necessary, the only tears or ointments to lubricate treatment is surgical. This the eye. Alternatively, partially or involves removal of the clouded completely closing your tear ducts lens and replacement with an with tiny removable silicone plugs artificial plastic lens. You will can reduce tear loss.

12 www.leukaemiacare.org.uk Hearing changes at doses greater than 40 Gy, usually to the jaw. It can be Some chemotherapy drugs spontaneous, but usually occurs such as cisplatin, high doses of after dental trauma. Treatment carboplatin, and high doses of includes pain killers, antibacterial radiation can cause hearing loss. mouth washes, antibiotics, if This can occur months or years necessary. after exposure. You are normally asked to have If you or others have noticed any a check-up at the dentist every impairment in your hearing, you one or two months for at least six should speak to your consultant months after radiation treatment or GP in order to be referred to ends. Your dentist will monitor specialised audiology services. you for any changes in your Depending on the type and dose mouth, teeth, and jaw. Thorough of cancer treatment that you oral care and regular visits to the received, you may need to see an dentist can help reduce these audiologist more often. symptoms. Mouth changes If you have had radiation treatment to your head or neck or have received certain chemotherapy drugs, you may notice late side effects such as dry mouth, gum infections, tooth loss, or bone loss of the jaw.

Osteonecrosis (bone death) of the jaw is due to damage to the small blood vessels supplying the bone. The poor supply of oxygen and nutrients as a result of this leads to necrosis of the jawbone. It usually occurs after radiotherapy

Helpline freephone 08088 010 444 13 Skin and nail side effects

Skin side effects Dry skin reactions can be effectively improved with Chemotherapy and radiotherapy moisturising creams and can cause several skin problems. lotions and patients should be The most common ones include encouraged to use them on a dry skin, hyperpigmentation regular basis. Photosensitivity is (increased colour) and best managed with the use of sun photosensitivity. Photosensitivity cream, protective clothing and is an enhanced skin response to moisturising after-sun creams. ultraviolet radiation (sunlight).

In patients who have had a stem Nail side effects cell transplant, graft-versus- There are several types of nail host disease (where the donated changes that may occur in stem cells react against the patients receiving chemotherapy. patient receiving the stem cells), In some patients, chemotherapy a number of late side effects are changes are only cosmetic, reported such as a rash, blisters whereas in others, they cause on the face, ears, palms, and pain and discomfort and impair soles, or sclerosis (hardening) of manual activities. the skin. These skin conditions The most common are often continuous in patients chemotherapies associated suffering from chronic graft- with these changes are taxane versus-host disease. chemotherapy drugs such In immunosuppressed patients, as docetaxel and paclitaxel, late side effects on skin can anthracyclines such as include basal and squamous cell daunorubicin, monoclonal carcinomas which are types of antibodies such as trastuzumab skin cancer. They are normally and tyrosine kinase inhibitors painless and tend to develop such as imatinib. slowly. If you notice any changes Minor changes include alteration to your skin, particularly where it of the colour of the nails, single is exposed, it is important to let transverse bands of white your medical team know.

14 www.leukaemiacare.org.uk discoloration of the nail plate and haemorrhages under the nails. More severe changes include reddening and swelling around the nail, abscesses under the nail, and onycholysis (detachment of the nail plate from the bed). While the appearance of some of these nail changes improves over time, some changes will remain permanent.

Helpline freephone 08088 010 444 15 Bone and joint issues

Bone changes developing premature ovarian insufficiency, thereby decreasing Bones reach their maximum bone mineral density later in life. density when people are in their early to mid-twenties, Most of the knowledge of the and then density subsequently late effects of cancer treatment reduces as they get older. In for bone loss is based on data women, this tends to happen from childhood cancer patients, after the menopause, and in whereas current knowledge men, later in life. Thinning of concerning late effects in adult the bones is a known side effect cancer survivors is not as evident. of cancer treatments such as Severe reduction in bone mineral chemotherapy, radiation therapy, density is known as osteoporosis steroid drugs and hormonal and may lead to bone fractures, therapy. With radiation therapy, particularly in patients who the thinning of the bone is received chemotherapy at a young restricted to the area treated. age. In these patients, treatment Chemotherapy treatments linked with substitution sex hormones is to bone loss include methotrexate, recommended to avoid decreased docetaxel, paclitaxel, imatinib and bone mineral density which could steroids. lead to early onset osteoporosis. Low levels of female/male The effect of chemotherapy on hormones, growth hormone the bone can be direct such deficiency and immobility are as for imatinib which targets all risk factors for osteoporosis. various receptors involved Hormone replacement therapy in the formation of the bone. should be prescribed with care in Alternatively, for women, the patients with a family history of cancer therapy can damage the breast cancer or clotting events. bone indirectly by affecting the ovarian function and hormonal Following treatment, it is essential status. Ovarian failure results to have regular check-ups, where in bone loss within two years. tests for bone mineral density Receipt of chemotherapy at a will be performed. The most young age can contribute to usual method for screening bone

16 www.leukaemiacare.org.uk mineral density is using a dual Osteonecrosis is a disease X-ray absorptiometry (DEXA) scan, resulting in the death of bone which is a low radiation X-ray that cells caused by temporary can detect small changes in the or permanent interruption bone density at the spine and hip. to the blood supply to the In premenopausal females and bone. Radiation therapy or younger men, Z-scores should be chemotherapy are the treatments assessed. Z-scores compare your most commonly associated with bone density with that of other osteonecrosis. The bone tissue people your same age and sex. loses its oxygen and nutrient supply and dies. It is most You can also minimise the risk of common in the hip and shoulder, bone loss by limiting your alcohol but can affect other large joints intake and not smoking. In such as the knee, elbow, wrist and addition, weight bearing exercise, ankle. One or more bones can be calcium and vitamin D are useful affected at the same time. It can for preserving bone density. cause significant pain and the Joint Changes amount of disability will depend on the bones/joints involved. Cancer treatments including chemotherapy drugs, steroids and Diagnosis of joint osteonecrosis radiotherapy can lead to muscle is made by X-Ray and magnetic weakness, scar tissue and bone resonance imaging (MRI). loss. This may cause a loss of Treatment consists of improving motion in joints. If you are at risk the use of the bone involved because of your previous cancer with physiotherapy and good treatment, you will be monitored pain relief. Surgery and joint for early signs of joint changes in replacement can be used if order to address them before they required. worsen. Examples of joint changes Hormone replacement therapy include difficulty in opening your should be prescribed with caution mouth wide and pain performing in patients with previous history certain movements which involve of clotting events or strong family the affected joint. history of breast cancer.

Helpline freephone 08088 010 444 17 Endocrine changes

The endocrine system is a network to prepare the bone marrow for a of glands that creates hormones stem cell transplant or in patients to control several important where cranial/craniospinal body functions including growth, radiotherapy is necessary. how the body generates energy, sleep, sexual development and Underactive thyroid reproduction. The main glands in (hypothyroidism) the endocrine system involve the The most common effect of hypothalamus and pituitary in the radiation is for the thyroid gland brain and the adrenal glands on to become underactive. This leads the kidneys. to a reduction of thyroid hormone production and a slowing of the Radiation to the head and body’s metabolism. If the body’s neck area and the use of some metabolism slows down, it does chemotherapies can result in not burn food fast enough to temporary or permanent damage provide adequate energy and to these components of the heat. Patients experience fatigue, endocrine system. This damage feelings of being cold, slow pulse can lead to early menopause, rate, weight gain, and sometimes infertility, underactive thyroid and hoarseness. Because an under weight gain. active thyroid is a permanent Thyroid changes side effect, you will be prescribed thyroxine tablets for life and you The thyroid gland is a small should have your thyroid function gland based in the lower neck monitored yearly. (Figure 1). It produces the hormone thyroxine that helps Thyroid nodules/thyroid cancer regulate the body’s metabolism. After radiotherapy to the neck, The thyroid gland is not usually thyroid nodules/cancer can affected by chemotherapy but occur. These late side effects is very sensitive to the effects of will be picked up during your radiotherapy to the neck. This is yearly thyroid test. If your doctor often given as part of treatment feels a nodule, he will arrange an

18 www.leukaemiacare.org.uk ultrasound of the thyroid gland by anything that interferes with to assess it. Usually a fine needle sperm production, including the aspiration is carried out so that hormones necessary for sperm the cells in the nodule can be production and the ability to examined. If the result is not have an erection and ejaculate. cancerous, your nodule will be Chemotherapy can slow down monitored by yearly ultrasounds. or stop sperm production either temporarily or permanently. If the cells become indicative of thyroid cancer, you will be referred Chemotherapy drugs most to a surgeon to discuss removing commonly implicated in affecting part or all of the thyroid gland. sperm production are carmustine, Symptoms and signs of thyroid busulphan, chlorambucil, cancer are a painless hard lump, cyclophosphamide, ifosfamide, hoarseness, difficulty swallowing, cisplatin and cytarabine. enlarged lymph nodes in your The specific effect on sperm neck and difficulty breathing. production, and whether it is temporary or permanent, will Decreased fertility and depend on which drug is used and early menopause its dose. Recovery can take many years. Both chemotherapy and radiotherapy can result in Testosterone secretion is usually premature ovarian failure and much less affected by these early menopause in women, and chemotherapies. Testosterone low testosterone levels and sperm is the male hormone secreted counts in men. These changes mainly in the testes, with a result in a permanent decrease in small amount being made in fertility for both genders. Fertility the adrenal glands. Testosterone is the ability to have children and regulates sex drive and sperm it can be affected by treatment production, muscle mass, bone with both chemotherapy and mass, fat distribution and the radiotherapy. production of red blood cells. Male patients who have gone through Male fertility puberty should be offered the In men, fertility can be affected opportunity to store sperm before

Helpline freephone 08088 010 444 19 Endocrine changes (cont.)

treatment starts. This may not Female fertility always be possible if the sperm quality and count have already The ovaries are very sensitive to been affected by the leukaemia or chemotherapy. Some drugs may if you need immediate treatment. cause either rapid and permanent ovarian failure or a period of Pelvic radiotherapy can affect normal fertility followed by an sperm production, testosterone early menopause. Some drugs, secretion and also the nerves particularly alkylating agents, are necessary for sustained erection. more damaging to the ovaries Testes are subject to radiotherapy than others. Chemotherapy as part of some treatments for drugs used in the treatment leukaemia and during total body of leukaemia and commonly therapy in preparation of patients implicated in affecting ovarian for a stem cell transplant. At function are similar to those these doses the treatment usually affecting sperm production, and results in permanent sterility. include carmustine, busulphan, Despite the fact that the cells that chlorambucil, cyclophosphamide, produce sperm are sensitive to ifosfamide, cisplatin and chemotherapy or radiotherapy, cytarabine. The impact of a those that produce testosterone given treatment will depend on are fairly resilient, and males the total dose of drugs received therefore rarely require hormone and the age at which they are replacement treatment. administered.

Fertility in men after treatment Radiotherapy produces severe is most effectively assessed by a dose-related damage to the semen analysis. It is a personal ovarian tissue, both the egg decision whether you have a test producing and hormone immediately or wait until you producing cells. It may cause begin actively trying for a child. immediate permanent sterility, Bearing in mind how the results temporary cessation of the may affect you, it is important to periods or lead to an early discuss this with your partner and menopause. The probability of family. infertility from a given dose of

20 www.leukaemiacare.org.uk radiotherapy increases with it is sensible to freeze your eggs age and simultaneous use of prior to receiving treatment. chemotherapy. In addition, All patients who may be the effect on the uterus with considering having children in high doses of radiotherapy is a the future and require anticancer decrease in the functional lining treatment, should be fully of the uterus, which can lead to an informed about the potential increased risk of early pregnancy effects on fertility at the time of loss. diagnosis and prior to starting Fertility preservation before potentially sterilising treatment. treatment is not as simple for When children are having women as it is for men; however, treatment, their parents should be the onset of regular periods is given this information. encouraging. Blood tests to look at certain hormone levels may suggest your level of fertility and the levels of eggs in your ovary. As soon as possible after you are informed that you will be receiving treatment, you should seek information from both your oncologist and fertility specialists in order to make informed decisions about fertility. For an acute leukaemia, treatment normally starts relatively quickly after the diagnosis, so speak to your medical team about timeframes.

In order to give you the option of having biological children in the future, in the event your fertility does not recover after treatment,

Helpline freephone 08088 010 444 21 Cognitive function effect

Cognitive function is a collective name for all the mental processes that allow us to carry out any task. While receiving chemotherapy, patients commonly notice that their short-term memory and concentration are diminished. Although this usually settles shortly after their treatment ends, it can occasionally be a long-term effect for some patients.

Radiation therapy to areas that include the brain can cause difficulties in the months or years after treatment ends. These late effects may include verbal memory loss, issues with concentration, speed of processing of information, and personality changes.

Following cancer treatment, you will have regular check- up appointments. If you have experienced any symptoms of brain changes, you will be assessed to determine if these are late side effects of your treatment or are related to the cancer itself. Referral for physical, occupational, or speech therapy should be made for late side effects.

22 www.leukaemiacare.org.uk Lymphoedema

Patients who have had radiation treatment as part of the conditioning regimen for a stem cell transplant (radiation of the bone marrow) are at risk of lymphoedema which occurs as a late effect.

Lymphoedema is a condition where the lymph fluid from the lymphatic system does not drain into the blood vessels as it should because of damage by radiation to the lymphatic vessels. The lymphatic fluid builds up in the tissues causing swelling. Lymphoedema can develop many years after treatment.

The degree and severity of lymphoedema varies among patients, even in patients receiving similar treatment. Lymphoedema may range from causing mild discomfort to pain with severe swelling and disfiguration. Lymphoedema may increase the risk for cellulitis and should be treated with lymphatic drainage massage and physiotherapy, compression garments, exercise and diet.

Helpline freephone 08088 010 444 23 Lung toxicity

Chemotherapies such as adequately. However, pulmonary bleomycin, busulphan, fibrosis may develop several carmustine, high doses of years after radiation therapy is cyclophosphamide and radiation completed. therapy to the chest are Pulmonary fibrosis can lead to associated with lung damage. chronic pulmonary insufficiency, Chronic graft-versus-host disease when the lungs cannot take in after a stem cell transplant is also enough oxygen or expel enough known to affect lung function. carbon dioxide to keep the body Lung damage can cause healthy. This condition depends shortness of breath, wheezing, on the proportion of the lung fever, dry cough, congestion, treated with radiation, because and feeling tired. In general, fibrosis is limited to the area of these symptoms usually begin the lung that has been irradiated. to improve after around two to When a large area of the lung has three weeks. However, months been subjected to radiotherapy, or years after radiotherapy, the extensive pulmonary fibrosis patients may develop serious side leads to pulmonary hypertension effects, including pneumonitis and cor pulmonale can develop. and fibrosis. Pneumonitis is an Cor pulmonale is an abnormal inflammation of the walls of the enlargement of the right side of alveoli (air sacs) in the lungs and the heart due to the pulmonary pulmonary fibrosis is a build-up hypertension. Symptoms of cor of scar tissue in the lungs. It is pulmonale include shortness of not usually associated with a breath and fainting on exertion, bacterial infection. fatigue, lethargy and chest pain.

Pulmonary fibrosis generally Oxygen therapy can be given for occurs following pneumonitis due serious trouble in breathing, and to radiation therapy. It commonly is normally administered through occurs six to 24 months after the nasal prongs or a mask that fits pneumonitis, especially if this over your mouth and nose. has not been diagnosed or treated Risk of lung damage is increased

24 www.leukaemiacare.org.uk by smoking, pre-existing lung problems such as asthma, young age of onset of treatment and administration of cancer drugs anthracyclines that increase the effect of radiotherapy.

Helpline freephone 08088 010 444 25 Heart toxicity

Acute side effects of the dose (dose-dependent). chemotherapy or radiation on Drugs such as daunorubicin, the heart occur during and may have a direct toxic effect on shortly after treatment. Most the heart muscle, affecting the side effects are short-lived and way the heart pumps. This may reversible, disappearing after be called cardiomyopathy or left treatment. However, some side ventricular dysfunction, and can effects of cancer treatment only result in heart failure in the long- develop months or years after the term. Ultimately, the chambers treatment has stopped of the heart become dilated and The heart can be affected by a do not pump the blood correctly. number of chemotherapy drugs Cardiotoxicity with anthracyclines used to treat blood cancers, as may become apparent within well as by radiotherapy if the one year of the completion of heart is in the radiotherapy field. treatment. This effect is often referred to as In addition to the dose and cardiotoxicity. length of your anthracycline Cardiotoxicity and treatment, risk factors for having chemotherapies cardiotoxicity are being younger (especially less than seven years The most common drugs old), female and previously implicated in late cardiotoxicity treated with chest radiotherapy or are the anthracyclines. These other cardiotoxic drugs. drugs are used in many treatment combinations for Mitoxantrone, which is a type patients with leukaemia. II topo-isomerase inhibitor They include doxorubicin that acts by disrupting the (adriamycin), daunorubicin, formation and repair of the DNA of idarubicin and epirubicin. They leukaemia cells as well as healthy are often administered as part cells, is used in the treatment of combination chemotherapy. of acute myeloid leukaemia However, their use is limited by and in treatment combination their toxic effects on the heart for chronic myeloid leukaemia. (cardiotoxicity) which depends on Mitoxantrone can affect the

26 www.leukaemiacare.org.uk heart muscle and, in turn, the disease (damage to one of the ability of the heart to pump four heart valves), and disease blood effectively. Usually these of the heart conduction system effects are associated with higher and pericardium (membrane doses of the drug but not always, enclosing the heart). Radiotherapy and some people will be more also causes proliferation of the susceptible than others. cells lining the blood vessels leading to narrowing of the artery In case of severe heart damage, and a reduction in blood flow. the use of medications such as The blood vessels supplying the beta-blockers and angiotensin heart may become hardened converting enzyme inhibitors or blocked, which is known as might offer some delay in coronary artery disease, affecting progression of your cardiotoxicity, the supply of oxygen getting to and also reverse part of the the heart. It can occur many years damage. These drugs might have after radiotherapy and, depending to be continued for life. on age at treatment, it is likely to Cardiotoxicity and occur at a younger age than in the normal population. radiation Cardiotoxicity related to previous radiation therapy can have significant consequences years after treatment, but the exact cause of it is not clear. Although modern radiotherapy fields try and avoid the heart where possible, it might still be exposed.

Radiotherapy can have a number of effects on the heart. It may lead to acute inflammation within the heart blood vessels. It can cause cardiomyopathy, coronary artery disease, valvular

Helpline freephone 08088 010 444 27 Kidney and liver toxicity

Kidney toxicity was reported in up to 50% of patients and chronic tubular Certain chemotherapy drugs are nephrotoxicity was reported in known to damage kidney function. up to 25%. For those receiving This may last for several months cisplatin, chronic glomerular or years after treatment with nephrotoxicity was reported in up these drugs, or even for life. Long- to 80% of patients and chronic term kidney toxicity has been tubular nephrotoxicity was reported after as long as 35 years reported in up to 30%. Carboplatin in patients who have received nephrotoxicity is similar to ifosfamide, cisplatin, carboplatin, cisplatin but less common and tacrolimus, methotrexate, usually much less severe. cyclophosphamide and radiotherapy as children. Patients Long-term renal toxicity caused with the highest risk for kidney by the calcineurin inhibitor damage were those receiving tacrolimus, which is sometimes ifosfamide and cisplatin. used in chronic lymphocytic leukaemia, can cause interstitial When the kidneys are not fibrosis and tubular atrophy functioning properly, filtration of leading to chronic kidney disease. the blood through the glomeruli (small filtering unit of tiny blood Methotrexate is used in the vessels in the kidney) is reduced, treatment of acute lymphoblastic and urea (breakdown product of leukaemia; however, at high proteins normally excreted in the doses, it is known to crystallise urine), builds up in the blood. In in the renal tubules and is also addition, the chemicals and water associated with tubulointerstitial extracted from this fluid as it nephritis that can lead to chronic passes along the kidney’s tubules kidney disease. (small tubes) cannot be regulated Cyclophosphamide can cause properly, resulting in a build-up of haemorrhagic cystitis, but it potassium, sodium and fluid. This is also reported to cause renal predisposes the kidney to damage tubular necrosis. Interferon-alpha and infection. can cause glomerulonephritis, In children and adolescents which can be occasionally seen treated with ifosfamide, chronic in patients with chronic myeloid glomerular nephrotoxicity leukaemia treated with high

28 www.leukaemiacare.org.uk doses of interferon-alpha over swelling of the liver cells. However, long periods of time. these chronic liver complications may be reversed within months Early detection of side effects of after treatment is stopped if chemotherapy on the kidney is recognised early enough. important to prevent progression to end stage renal disease. Following the use of Patients who have received 6-mercaptopurine as ifosfamide should be monitored maintenance treatment for yearly. acute lymphoblastic leukaemia, hepatocellular toxicity and Liver toxicity cholestatic toxicity, can lead Hepatotoxicity is the injury of liver to obstruction of the bile duct. cells as a result of impaired liver The risk of hepatotoxicity is function caused by exposure to a related to the cumulative dose of drug. Certain chemotherapy drugs methotrexate. Early portal fibrosis can damage cells in the liver by is found only in patients with interfering with the production of prolonged therapy. their DNA, as well as the process Cytarabine can cause of their cell division. Of these hepatotoxicity which is dependent drugs, those that are used in on the total dose received. Mild patients with leukaemia include elevation of liver enzyme levels the anti metabolites drugs are seen in 5% to 10% of patients, (methotrexate, 6 mercaptopurine but higher doses can cause liver and cytarabine) and alkylating abnormalities. Severe cholestatic drugs (cisplatin, carboplatin and toxicity related to cytarabine chlorambucil). therapy has been reported.

Methotrexate has been associated Cyclophosphamide, chlorambucil with steatosis, steatohepatitis, and 6-mercaptopurine are known fibrosis and cirrhosis. Steatosis, to cause a condition known as also known as non-alcoholic sinusoidal obstructive syndrome fatty liver, is an accumulation of the liver. Sinusoidal obstruction of fat in the liver cells, and syndrome is the blockage of the steatohepatitis occurs where very small (microscopic) veins in the steatosis is associated with the liver. It is a potentially fatal an area of inflammation and

Helpline freephone 08088 010 444 29 Kidney and liver toxicity (cont.)

form of hepatic injury which can present in an acute, subacute or chronic form. It is usually accompanied with abdominal pain and swelling, portal hypertension and elevations of liver enzyme levels.

Lenalidomide is an immunomodulatory drug used in the treatment of relapsed chronic lymphocytic leukaemia which has been associated with rare, but severe, hepatotoxicity. Side effects of toxic hepatitis and cholestatic hepatitis have been reported approximately eight weeks after starting lenalidomide. Re-activation of viruses such as herpes zoster, which causes , or hepatitis B have also been reported with lenalidomide treatment.

Recognising the early patterns of hepatotoxicity by means of regular liver function tests can allow for early management of these side effects. Patients who have received 6-mercaptopurine or methotrexate as part of their treatment for leukaemia should have liver function tests every one to three years.

30 www.leukaemiacare.org.uk Nerve side effects

Certain anticancer drugs can It is important to let your cause temporary or permanent doctor know immediately if peripheral neuropathy, which you experience any of these is the damage or dysfunction symptoms so your medication of one or more nerves resulting can be adjusted to relieve the in numbness, tingling, muscle condition. Peripheral neuropathy weakness and pain in the area can last for many years after the supplied by the nerves. Peripheral end of treatment and dramatically neuropathy can develop weeks reduce quality of life. after starting chemotherapy, and may last from months to years after chemotherapy is finished.

Several anticancer drugs used to treat leukaemia are known to cause peripheral neuropathy such as platinum-based drugs (cisplatin and carboplatin), vinca alkaloids drugs (vincristine) and taxane drugs (docetaxel and paclitaxel). About 58% of patients who receive taxane based chemotherapy develop peripheral neuropathy.

Peripheral neuropathy caused by docetaxel can persist for up to three years after treatment is finished and significantly affects patients‘ quality of life. Long-term peripheral neuropathy is related with high levels of disease including disorders of co- ordination, balance and speech, insomnia and depression.

Helpline freephone 08088 010 444 31 Secondary cancers

Secondary cancers have become that are most likely to cause one of the most serious late side this damage are alkylating effects of cancer treatments in drugs (cyclophosphamide), recent years, both for children and platinum drugs (cisplatin), adults. A secondary cancer is the and anthracycline drugs development of a new primary (daunorubicin and doxorubicin). cancer of a different type to the Radiotherapy is also known to original cancer often years after break DNA strands leading to treatment. For example, patients gene mutation and subsequently who have had treatment for acute cancer transformation in the new lymphoblastic leukaemia may cell. develop a thyroid cancer 15 years The risk factors for a secondary after their treatment. cancer are: Secondary cancers are often mistakenly considered to be Type of treatments: related to the first cancer, or • Patients who receive thought to be the spread of radiotherapy and chemotherapy the first cancer to other areas together are at greater risk than in the body. These should those on either treatment alone. more appropriately be called Chemotherapy is known to metastasis. Analysis of the • be a greater risk factor than thyroid cancer will show thyroid radiation therapy in causing cancer cells, and not leukaemia leukaemia. cells that have travelled to the thyroid gland. Secondary cancers • Alkylating chemotherapy drugs often occur years or decades have a greater risk of causing after the original treatment of secondary cancers. radiotherapy or chemotherapy. Intensity of treatment (number Any chemotherapy whose of cycles) and doses received. anticancer action is to damage DNA of cells may For patients who received result in secondary cancers radiotherapy, the area treated in the future. Chemotherapies is also important.

32 www.leukaemiacare.org.uk Age at the time of treatment, particularly radiation. Since emerging new treatments are allowing patients with childhood cancers to survive well into adulthood, the incidence of secondary cancers is rising.

It is important to discuss with your doctor the types of secondary cancers you may be at risk of, following the treatment for leukaemia you received. You should have regular check-ups for the rest of your life to catch any recurrence of your leukaemia and any new cancer that may occur. In addition, it is important to be self- aware and report new symptoms as soon as possible. Patients should be encouraged to enter a screening program where one is available.

Helpline freephone 08088 010 444 33 Managing late effects

Awareness of physical Patients are encouraged to enter a screening program where one late and long-term is available, as well as following a effects healthy lifestyle, a balanced diet Your doctor will have made you and a regular exercise program. It aware of any potential late and is important to avoid risk factors long-term side effects before such as smoking and excess sun starting treatment. However, the exposure. main priority after diagnosis is treating your leukaemia as soon Exercise as possible. Since your risk of If you have experienced side late effects depends on your age, effects after finishing treatment, diagnosis and treatment you regular physical activity can help received, you may not be able to you manage these: prevent them happening, but you Regular activity can help can work towards catching them • alleviate fatigue. Even a small early and reducing the risk of increase in activity can help to them progressing. improve your energy levels. It is important to discuss risks During exercise, the brain for late effects with your clinical • produces chemicals called team. Ideally you should have a endorphins that help to manage written list of them. You should stress, anxiety, low mood or understand how essential depression. monitoring is and that attending your follow-up appointments is • Exercise can help build muscle important. You should be aware strength that is often affected of the symptoms to look for. Be during treatment. Low intensity self-aware of your skin, especially weight training may help to moles and any new lumps, so build strength. you can report any changes as soon as possible. Regular self- • If you have gained weight during examination of breasts and treatment due to inactivity, testicles is advisable. exercise can help you reach a healthy weight. This will reduce

34 www.leukaemiacare.org.uk the risk of getting other health meat, poultry, fish, nuts, eggs problems. and pulses like beans and lentils • Exercise promotes better sleep. Being more active during the • Some milk and dairy foods such day helps you relax and sleep as cheese, yoghurts and cream better at night. • A small amount of food high in fat, salt and sugar Sensitivity to sunlight is a common side effect of • Plenty of water many treatments. Wear a You can find more information hat and high factor sun about diet and exercise in the cream whenever you are Living Well booklets on our outside to protect your website at www.leukaemiacare. skin. org.uk/supportand-information/ information-booklets/. Healthy eating Managing your work A balanced diet is eating the commitments correct amount of the seven If you develop a late effect, it is nutrients required to give you likely that you will be referred enough energy for daily activity. to a clinician with expertise in These seven nutrients are: that area. Most late effects are protein, carbohydrates, fats, fibre, managed as they would whether minerals, vitamins and water. A they are a result of leukaemia daily diet should include varying treatment or not. Because some portions of: treatments are associated with a significant number of late effects, Fruit and vegetables • you may find yourself seeing • Starchy, carbohydrate-rich several clinicians at different foods such as bread, rice, pasta hospitals, which can be stressful and potatoes and have an impact on your education or work. • Foods high in protein such as

Helpline freephone 08088 010 444 35 Managing late effects (cont.)

You will need to talk to your experience of leukaemia has employer with regard to your changed you, and perhaps those working arrangements. You may closest to you as well. This can need to negotiate a reduction affect your body image and your in working hours, or to make an confidence and lead to a feeling of arrangement with your employer isolation and difficulties in your for times when you may need to relationships. It is important that go to hospital, or for those times you discuss your feelings with when you may not be well enough your clinical team, so they can to work. assess your needs for support and intervention, and point you in the It is important to know that right direction for advice. people who have had any form of cancer are covered by the Equality Not everything about having Act. This means that legally cancer is bad. Many people find a employers cannot discriminate renewed sense of purpose or value against you and must make in life. Relationships can become reasonable adjustments relating closer and more meaningful. Look to the late effects that you are for the positives and learn from suffering. Your consultant or your experience of leukaemia. GP can arrange letters to your Manage uncertainty by taking employer to confirm that you are control and making positive suffering late effects of leukaemia choices about the rest of your life. treatment and its impact on your Fears of cancer recurrence can be work. very troubling, but they usually fade with time. Managing with emotional and Think about your priorities and make plans for the future you psychological late want. This could be making more effects time for hobbies and interests, or Late effects may have a negative with the people you love. Or it can effect on your quality of life. be bigger things like a change of You may feel that you are not occupation, or a new direction in the same person, that your life. Find a new normal, based on

36 www.leukaemiacare.org.uk your priorities now, and build your leukaemia. Most people cope life into what you want it to be. Be with this informal support, but kind to yourself, make time for others will need professional yourself and the things you want psychological help, especially to do. if they are depressed. Places to seek this include your local health What support should I centre or cancer centre, or there look for? are some private or charitable services that offer support. See if Most of the services for people your local cancer services have a with leukaemia are focused on the directory or recommendations of earlier stages of diagnosis and who can help. treatment, so patients may feel lonely or even abandoned when Mindfulness has emerged as treatment is over. This period a way that people can learn to often involves many challenges. live with long-term challenges It can feel hard to get back to and periods of uncertainty, normal, as so many things will by cultivating a balanced and have changed. This is a time when non-judgemental approach to uncertainty can be a prominent their experience of life. It is often feature of life, and most people taught in groups but can be have an ongoing fear of the learned and practiced alone. leukaemia coming back.

It is important as you go through life after treatment to have someone to listen and be there for you. This may be your partner, another family member or a friend. Many people also find support groups helpful, sharing experiences with people who know what they have been through.

For others, it is better to move on and seek a new identity after

Helpline freephone 08088 010 444 37 Glossary

Acute Lymphoblastic anticancer drug. Leukaemia (ALL) Antibiotic A leukaemia in which A drug used to treat or prevent lymphocytes start multiplying bacterial infections. uncontrollably in the bone marrow, resulting in high Blood Cancer numbers of abnormal, immature Cancer of blood cells from the lymphocytes. Lymphocytes are a bone marrow or lymphatic type of white blood cell involved in system. There are three main the immune response. types of blood cancer: Acute Myeloid Leukaemia • Leukaemia begins in the bone (AML) marrow and is classified A rapid and aggressive cancer according to the type of blood of the myeloid cells in the bone cell it affects (either myeloid marrow. or lymphoid) and whether it grows quickly (acute) or slowly Alkaloid (chronic). Naturally occurring organic nitrogen-containing compounds. • Lymphoma starts in the Some synthetic compounds of lymphocyte white blood cells similar structure may also be within the lymphatic system. termed alkaloids. • Myeloma is a cancer of the Anaemia plasma cells and starts in the bone marrow. Plasma cells are A condition where the number of a type of white blood cell that red blood cells are reduced. Red makes antibodies. blood cells contain haemoglobin and transport oxygen to body Blood Cells cells. This may be due to a lack Cells present in the blood and of iron, leukaemia, or sickle cell bone marrow which include red disease. blood cells, white blood cells and Anthracycline platelets. These three types of blood cell make up 45% of the Antibiotic derived from the blood volume, with the remaining bacteria Streptomyces peucetius 55% being plasma, the liquid which was found to be an effective component of blood.

38 www.leukaemiacare.org.uk Bone Marrow numbers of small, mature lymphocyte cells, which are The soft blood-forming tissue unable to fight infection, and that fills the cavities of bones their presence prevents the bone and contains fat, immature and marrow from producing healthy mature blood cells, including blood cells of all types. white blood cells, red blood cells and platelets. Chronic Myeloid Leukaemia Bone Marrow Failure (CML) A leukaemia in which the myeloid The bone marrow is unable to cells start multiplying in the bone keep up with the body’s need for marrow leading to large numbers white and red blood cells and of abnormal, immature myeloid platelets. cells called blasts, which prevent Bone Marrow Relapse the bone marrow from producing enough healthy blood cells of all The presence of greater than types. 25% of leukaemia cells in a bone marrow aspirate following the Conditioning Regimen first complete remission. This treatment regimen consists Chemo-immunotherapy of chemotherapy or total body irradiation to eliminate the cancer Chemotherapy to which an cells and prevent the immune immunotherapy drug has been system rejecting the new stem added. cells prior to an allogeneic stem Chemotherapy cell transplant. Drugs that work in different ways Corticosteroids (Steroids) to stop the growth of cancer cells, Hormones normally produced either by killing the cells or by by the adrenal glands which are stopping them from dividing. two small glands found above Chronic Lymphocytic the kidneys. Corticosteroids Leukaemia (CLL) reduce inflammation (redness and swelling) and the activity A leukaemia in which the of the immune system. They are B-lymphocytes (B-cells) in the used for inflammatory conditions bone marrow start multiplying such as asthma and eczema and excessively leading to large autoimmune such as

Helpline freephone 08088 010 444 39 Glossary (cont.)

rheumatoid arthritis. infection or cancer. They are located mainly in the spleen but Cytarabine also in the neck, armpit and groin. Antimetabolite drug which works by disrupting the DNA of cancer Lymphocytes cells, thereby slowing or stopping A type of white blood cell that is their growth. vitally important to the immune response. There are three types of Graft-versus-Host Disease lymphocytes: B-cells, T-cells and A serious complication that natural killer (NK)-cells. B-cells occurs with allogeneic stem cell produce antibodies that seek transplants. It happens when the out invading organisms. T-cells graft (donated marrow or stem destroy the organisms that have cells) reacts against the host been labelled by the B-cells, as (patient receiving the stem cells). well as internal cells that have become cancerous. NK-cells Immunotherapy attack cancer cells and viruses. A treatment that uses the body’s own immune system to fight the Lymphoedema cancer. A condition that causes swelling in the body’s tissues affecting Incidence any part of the body, but usually The number of new cases of develops in the arms or legs. It disease which are reported as an develops when the lymphatic incidence rate or a risk. system is blocked or does not work properly. Intravesical In the bladder (injection, cancer). Metastases A development in another part of Lymph Nodes the body of cancer cells related to Component of the lymphatic the primary cancer. For example, a system (part of the body’s patient with lung cancer can have immune system) that contain metastases in the liver which lymphocytes which produce have often travelled to the liver antibodies and macrophage through the blood. cells which digest dead cells. Lymph nodes are swollen with Mutation (gene) cell fragments in the event of A permanent alteration in the

40 www.leukaemiacare.org.uk DNA sequence of a gene, so that it part of the body which is called differs from what is found in most a metastatic cancer. Secondary people. cancers are often other blood cancers, lung cancer and skin Neuropathy cancers. Damage or dysfunction of one or more nerves that can result Spleen in numbness, tingling, muscle The largest organ of the lymphatic weakness and pain in the affected system whose function is to help area. clear the body of toxins, waste and other unwanted materials. The Nodule spleen is located under the ribs A rounded lump with a distinct on the left of the abdomen. border. Splenomegaly Portal Hypertension Enlarged spleen. A high pressure in the portal vein which carries blood from the Stem Cell Transplant digestive organs to the liver. It is A transplant of stem cells derived caused by a blockage to the blood from part of the same individual flow in the liver. or a donor. Pulmonary Hypertension Targeted Therapy A high pressure in the pulmonary Drugs that specifically interrupt arteries which supply blood to the the leukaemia cells from growing lung to be oxygenated. It is caused in the body. However, these drugs by hardened pulmonary arteries do not also harm the body’s or disease in the lung. healthy cells the way conventional drugs do. Secondary Cancers Second primary cancer that Total Body Irradiation (TBI) often appears after a number of Radiation treatment to the whole years following chemotherapy body to prepare a patient for a or radiation treatment for a stem cell transplant. Irradiation previous different primary is the term used when radiation cancer. Secondary cancer is not falls onto a surface (e.g. radiation a re-occurrence or spread of waves on the surface of the the primary cancer in another skin). Total body irradiation is

Helpline freephone 08088 010 444 41 Glossary (cont.)

used to destroy or suppress the Inflammation of the blood vessels. patient’s immune system in order to prevent rejection of the Watch and Wait donor’s stem cells. In addition, A management approach for slow it can eliminate any residual growing blood cancers. Also called cancer cells in the patient’s body active monitoring, the Watch to increase the chances of a and Wait approach is the current successful transplant. standard of care for patients with slow growing blood cancers Tyrosine Kinase Inhibitors who do not have any symptoms. (TKIs) Treatment is usually started Drugs that inhibit the tyrosine either once symptoms appear kinase enzyme which controls or when test results suggest the the function of a cell. Tyrosine blood cancer is progressing. kinase inhibitors can switch ‘off’ tyrosine kinase enzymes that White Blood Cells are permanently active due to a White blood cells are one of the mutation. types of cells found in the blood and bone marrow, along with red Tyrosine Kinase Receptors blood cells and platelets. White Receptors present in the blood cells create an immune membranes of all of the body’s response against both infectious cells which can be activated by disease and foreign invaders. the enzyme tyrosine kinase. Granulocyte white blood cells include the neutrophils (protect Urea against bacterial infections A breakdown product of proteins and inflammation), eosinophils in the body which is excreted in (protect against parasites and the urine. allergens) and basophils (create the inflammatory reactions Uric Acid during an immune response). A product of the metabolic Other white blood cells include breakdown of purine nucleotides the lymphocytes (recognise which are the chemical building bacteria, viruses and toxins, to blocks of DNA. Uric acid is a which they produce antibodies) normal component of urine. and monocytes (clear infection products from the body). Vasculitis

42 www.leukaemiacare.org.uk Useful contacts and further support

There are a number of helpful Blood Cancer UK sources to support you during Blood Cancer UK is the leading your diagnosis, treatment and charity into the research of blood beyond, including: cancers. They offer support to • Your haematologist and patients, their family and friends healthcare team through patient services. • Your family and friends 0808 2080 888 • Your psychologist (ask your www.bloodcancer.org.uk haematologist or CNS for a Cancer Research UK referral) Cancer Research UK is a leading Reliable online sources, • charity dedicated to cancer such as Leukaemia Care research. Charitable organisations • 0808 800 4040 There are a number of www.cancerresearchuk.org organisations, including ourselves, who provide expert Macmillan advice and information. Macmillan provides free practical, Leukaemia Care medical and financial support for people facing cancer. We are a charity dedicated to 0808 808 0000 supporting anyone affected by www.macmillan.org.uk the diagnosis of any blood cancer. We provide emotional support Maggie’s Centres through a range of support Maggie’s offers free practical, services including a helpline, emotional and social support patient and carer conferences, to people with cancer and their support group, informative families and friends. website, one-to-one buddy service and high-quality patient 0300 123 1801 information. We also have a nurse www.maggiescentres.org on our help line for any medical Citizens Advice Bureau (CAB) queries relating to your diagnosis. Offers advice on benefits and Helpline: 08088 010 444 financial assistance. www.leukaemiacare.org.uk [email protected] 08444 111 444 www.adviceguide.org.uk

Helpline freephone 08088 010 444 43 Leukaemia Care is a national charity dedicated to providing information, advice and support to anyone affected by a blood cancer.

Around 34,000 new cases of blood cancer are diagnosed in the UK each year. We are here to support you, whether you’re a patient, carer or family member.

Want to talk?

Helpline: 08088 010 444 (free from landlines and all major mobile networks) Office Line: 01905 755977 www.leukaemiacare.org.uk [email protected]

Leukaemia Care, One Birch Court, Blackpole East, Worcester, WR3 8SG Leukaemia Care is registered as a charity in England and Wales (no.1183890) and Scotland (no. SCO49802). Company number: 11911752. Registered office address: One Birch Court, Blackpole East, Worcester, WR3 8SG