Controlling symptoms of mesothelioma This information is an extract from the booklet Understanding mesothelioma. You may find the full booklet helpful. We can send you a free copy see page 9. Contents Treatments to control symptoms of pleural mesothelioma Treatments to control symptoms of peritoneal mesothelioma Treatments to control other symptoms of mesothelioma For most people with mesothelioma, the main aim of treatment is to control symptoms. There are a number of drug treatments and other procedures that can be used to control the symptoms of both pleural and peritoneal mesothelioma. There are several people who can help you manage your symptoms, including your: hospital consultant nurse specialist GP. They may suggest referring you to a palliative care team. These teams specialise in managing symptoms and also provide emotional support for you and your family. Many palliative care teams have nurse specialists who can visit you at home, call the Macmillan support line on 0808 808 00 00 for more information. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 1 of 9
Treatments to control symptoms of pleural mesothelioma Breathlessness Breathlessness is a common symptom of pleural mesothelioma. It s often caused by a build-up of the fluid between the two layers of the pleura (the membranes that cover the lungs). This is called a pleural effusion. Treating a pleural effusion A pleural effusion is treated by placing a small tube between the two layers of the pleura and draining off the fluid. The tube is usually put in the side of your chest. You will have a local anaesthetic to numb the area. When the tube is in place it will usually be connected to a bag or a bottle for the fluid to drain into. You may need to have the fluid removed on a regular basis. After the fluid from the pleural effusion has been drained, it may be possible to seal the two layers of the pleura together to prevent the fluid building up again. This is called pleurodesis. Your doctor can put sterile talcum powder (talc), or a particular chemical powder, into the pleural space through the tube. This causes the membranes to stick together and helps stop pleural effusions happening again. A pleurodesis may sometimes be done during a video-assisted thoracoscopy. Your doctor will be able to tell you about this. Some people may have a soft flexible tube (pleural catheter) put in, particularly if they re unable to have pleurodesis. The tube can be tunnelled under the skin and inserted into the space where fluid collects. It can be left in position so that any fluid can be drained off whenever needed without you having a tube put in each time. The end of the tube is covered with a dressing when you re not using it. You may have a catheter put in as a day-case procedure or you may need to stay in hospital for a few days. You can be taught how to drain the fluid yourself or the hospital staff can arrange for a district nurse to do this. We have more detailed information on managing a pleural effusion, which we can send you. Page 2 of 9 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
A pleural effusion Rib Outer pleura Pleural cavity Inner pleura Pleural effusion Other ways to manage breathlessness These include breathing techniques, relaxation and coping strategies. These can all help to reduce the distress of breathlessness and make your breathing easier. Even simple measures, such as how you position yourself when sitting or standing, can be helpful. Using a fan or sitting by an open window with cool air blowing on to your face may also help ease breathlessness. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 3 of 9
Your doctor may also prescribe medicines to help with breathlessness, such as a low dose of the painkiller morphine, or drugs to help relieve the anxiety and panic that breathlessness can cause. Some people may benefit from using oxygen at home. Your doctor or palliative care nurse can organise for you to have oxygen at home if it s suitable for you. We have more detailed information in our booklet Managing breathlessness. We can send you a copy. Cough Coughing is also a common symptom of mesothelioma. This can be difficult to cope with as it can sometimes cause other symptoms such as pain, vomiting and tiredness. Your doctor may be able to give you medicines to help. You may also find it helpful to: Avoid things that seem to aggravate your cough these will vary from person to person. Use steam inhalations or saline nebulisers. A nebuliser is a small machine that turns saline into a fine mist, so you can breathe it deep into your lungs. Sleep in a different position maybe propped up with pillows. Treatments to control symptoms of peritoneal mesothelioma Peritoneal mesothelioma can cause a build-up of fluid in the tummy (abdomen) known as ascites. Your tummy becomes swollen and you may have pain, and feel sick and breathless. Treating ascites Ascites can be treated by draining off the fluid from your tummy. This helps to relieve the symptoms. You will be given a local anaesthetic injection in your tummy to numb the area. A small cut is made in the skin and a thin tube is inserted. Page 4 of 9 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
The tube is attached to a drainage bag and the fluid slowly drains out. The tube may be held in place with a couple of stitches and covered with a dressing. The length of time that the tube needs to stay in place depends on the amount of fluid that needs to be drained off. Sometimes, a small amount of fluid can be drained in the outpatients clinic. But if there is a large amount of fluid, the procedure may need to be carried out in hospital under the supervision of the doctors and nurses. The drain may stay in place for up to 24 hours, although occasionally it may stay in longer. It s possible for the fluid to build up again, and you may need the fluid drained off more than once. If the fluid builds up again quickly, your doctor may put a tube into your tummy which can be left in place. When the fluid starts to build up it can be attached to a drainage bottle and drained off. The end of the tube is covered with a dressing when you re not using it. Your doctor will be able to give you more information about this. Side view of the abdomen showing draining of ascites Peritoneum Bowel Ascites Womb 500 450 400 350 300 250 200 150 100 50 Bladder Rectum (back passage) Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 5 of 9
Your doctor may also prescribe a tablet called spironolactone. This is a water tablet (diuretic), which makes you pass urine more often. This may help stop the build-up of fluid in the abdomen. We have more detailed information about ascites, which we can send you. Managing bowel obstruction Occasionally, peritoneal mesothelioma may cause the bowel to block. Symptoms may include pain, tummy bloating, sickness and constipation. If this happens, your doctors will give you medicines to control your symptoms. They may also suggest treatments that will help rest your bowel for a while and help with the blockage. Treatments to control other symptoms of mesothelioma Pain Pain is a common symptom of mesothelioma. Let your doctors or specialist nurse know if you have pain so that they can assess and treat it early on. Painkillers There are many painkilling drugs available to treat different types and levels of pain. They include: painkillers, such as paracetamol, codeine or morphine; and anti-inflammatory drugs, such as ibuprofen (Brufen ) and diclofenac (Voltarol ). Some people find that they have nerve pain (also known as neuropathic pain), which happens when the mesothelioma presses on nerves. This type of pain is best treated with specific painkillers that treat nerve pain such as gabapentin and pregabalin (Lyrica ). Often, a combination of painkillers is needed to get the best pain control. Page 6 of 9 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
Other ways to control pain Other general ways of relaxing and helping to reduce your pain include: listening to relaxation CDs having a long soak in a warm bath having a massage to an area of your body that isn t painful, such as your hand or foot. Occasionally, if your pain is troublesome, your doctor or nurse may suggest a short admission to hospital or a hospice so that your pain can be controlled while you re an inpatient. They may also suggest referring you to a doctor who specialises in pain control, or a specialist pain clinic. They may use other methods of pain control, such as specialised procedures to block nerves, if nerve pain is a problem. We have a booklet called Controlling cancer pain, which we can send you. Night sweats Mesothelioma can cause some people to sweat a lot at night. This can be distressing, especially if you wake at night with damp bed clothes and bedding. Let your doctor know if this happens to you as they may be able to give you medicines to help. You may also find the following tips helpful: Try avoiding drinks that contain caffeine before you go to bed or in the night. Keep the room temperature cool or use a fan. Avoid using duvets or blankets that make you too hot. Lie on a towel so that you avoid getting your bedding damp Use cotton sheets and bed clothes, and have some spare so that you can change them in the night if you need to. Loss of appetite Mesothelioma and some cancer treatments can cause problems with eating and digestion. If your appetite is poor, try having smaller, more frequent meals. You can also add highprotein powders to your normal food. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 7 of 9
Or you can replace meals with nutritious, high-calorie drinks. These are available from most chemists and can be prescribed by your GP. If you have lost your appetite, medicines such as steroids may help improve it. You can also ask to be referred to a dietitian at your hospital. They can advise you which foods are best for you and also whether any food supplements would help you. If you re at home, your GP can arrange this for you. Our booklet Eating problems and cancer has more information. Tiredness Many people with mesothelioma feel tired and have less energy to do the things they normally do. This may be due to the illness or it may be a side effect of treatment. It s important not to do too much. Your body will tell you when you need to rest, but it s important not to stop doing things completely. Try to balance rest with gentle activity, such as walking. Some people find it helpful to set goals to help them plan their daily activities. These goals may include cooking a light meal, going for a short walk or meeting a friend. Some causes of tiredness can be treated, for example anaemia (low red blood cells) can be treated with a blood transfusion. Your doctor can take a blood sample from you to find out if you have anaemia. If sleep problems are causing or contributing to your tiredness, then improving your sleep will help you feel better. You can read about ways of improving your sleep in our information about difficulty sleeping. Tiredness is also a common symptom of depression. If you think you re depressed, talk to your doctor or nurse. You and your doctor will be able to work out if what you re feeling is depression or fatigue. Talking about your feelings with a professional counsellor can often help depression. Antidepressants may also help you feel better. Our booklet Coping with fatigue has more information. Page 8 of 9 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
More information and support More than one in three of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don t have to go through it alone. The Macmillan team is with you every step of the way. To order a copy of Understanding mesothelioma or any other cancer information, visit be.macmillan.org.uk or call 0808 808 00 00. We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or thirdparty information or websites included or referred to in it. Macmillan Cancer Support 2013. Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ REVISED IN APRIL 2015 Planned review in 2017 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 9 of 9