Managing symptoms of pleural mesothelioma

Managing

symptoms

Irrespective of which anti-cancer treatment you have it is likely the mesothelioma will cause you to have some symptoms such as breathlessness, cough, pain, or sweating.

For this reason, working with doctors and nurses who specialise in symptom management (Palliative Care Teams) is recommended for all patients.

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Shortness of Breath

Pain

Fatigue

Loss of appetite

Sweating

Constipation

Nausea and vomiting

Coughing

Shortness of Breath (Pleural Effusion)

What is it?

The most common cause of shortness of breath in mesothelioma patients is pleural effusion. This is an accumulation of fluid produced by the mesothelioma tumour in the space between the two layers of the pleural membrane. The majority of people with pleural mesothelioma develop pleural effusions, particularly in the early stage of the disease. Large effusions, particularly if they develop rapidly, may cause severe shortness of breath.

The effusion is confirmed by chest x-ray and the immediate treatment is drainage (‘aspiration’, ‘pleural tap’ or ‘thoracocentesis’) in hospital with rapid relief of breathlessness. In some cases the drainage tube is left in place for a few days to ensure all the fluid is removed. Unfortunately pleural effusions often recur and can become increasingly difficult to drain because the fluid tends to form in pockets (i.e. becomes ‘loculated’) or becomes very sticky.

 

How can it be managed?

In order to prevent recurrent effusions a procedure called pleurodesis is performed. Pleurodesis is a method of making the two layers of the pleural membrane stick together which obliterates the space between them thus preventing the formation of further effusions.

The procedure involves introducing an irritant material, usually sterile talc, via a tube (either a chest drain or thoracoscope) into the space between the pleural layers (any fluid has to be drained first). This is sometimes aided by video-camera viewing of the inside of the chest – a VATS (video-assisted thoracoscopy) procedure. Pleurodesis tends to be successful in most cases, particularly if performed early on in the disease.

Managing pleural effusions with a tunnelled indwelling catheter (TIPC) is becoming more common, this can be useful when fluid can’t be managed by other means, this involves having a tube inserted into the pleural space which exits out of the skin. The tube is neatly secured under a dressing until needed and when fluid needs to be drained it can be uncovered and connected to a drainage bottle that contains a vacuum.

Before this technique was developed patients often had repeated trips to the hospital to have fluid drained away to relieve breathlessness, having a TIPC means fluid can be easily drained off at home either by the community nurses or sometimes patients and their relatives learn to do this.

A group of healthcare professionals have created the My Pleural Effusion Journey website, to help patients and carers understand more about the different options and what might be the right choice for them.

 

Other less common causes of shortness of breath include:

Loss of chest wall mobility
Loss of chest wall mobility occurs when mesothelioma attaches itself to chest wall structures that makes them less flexible, this reduces the chest movements required in breathing. Similarly, extensive thickening and rigidity of the pleura may cause the lung to become fixed or trapped. Although there are no ways of resolving these problems with medication or surgery, patients may be helped by learning to control and pace their breathing as described later in the Self-help Techniques Section.

Loss of lung volume
Loss of lung volume occurs when mesothelioma affecting the pleura grows into lung tissue thus reducing the ability of the lung to perform its vital function, the exchange of oxygen and carbon dioxide. Surgical removal of the tumour that affects the lung – a ‘debulking procedure’ might be an option and this may reduce breathlessness. In most cases patients may benefit from self-help techniques (please see Self-help Techniques Section).

Pericardial effusion
Pericardial effusion is an accumulation of fluid in the membrane containing the heart – the ‘pericardial sac’. This may also cause breathlessness and is sometimes seen on chest x-ray or diagnosed by ultrasound scan or CT scan. This can be drained, usually in a cardiology unit.

 

Coughing

What is it?

Coughing is an important reflex to clear the throat and to stop foreign bodies entering the airway. Nearly half of all mesothelioma patients will be affected by cough which has multiple complex causes. The cough is usually ‘dry’ (not producing phlegm/sputum) in its nature and may lead to fatigue (see below), breathlessness (see above), pain (see below), poor sleep, retching, incontinence, low mood and embarrassment.

 

How can it be managed?
  • Sip water regularly and staying hydrated
  • Break the cough cycle by sniffing and swallowing
  • Suck boiled sweets or ice cubes or try chewing gum
  • Steam inhalations
  • Sleeping propped up with pillows
  • Ginger tea or hot honey and lemon drink
  • Avoid triggers such as temperature changes, perfumes, allergens, smoke

Your specialist nurse or local doctor may be able to advise on medication to help such as simple linctus (available without a prescription), some pain killers that contain codeine or morphine and steroids. It is important to only take these medications if advised by your nurse or doctor.
If your cough has changed at all or if you are producing phlegm, it is important to seek advice from your local doctor.

 

Pain

What is it?

Pain is a common symptom of mesothelioma. In most cases it can be controlled with medication. Typically pain is on one side of the chest, sometimes in the shoulder or back, and may be dragging or like toothache. Movement or deep breathing may make it worse.

 

How can it be managed?

The usual practice is to use simple painkillers initially such as paracetamol and ibuprofen. If these are ineffective the next step is to use morphine. Patients are often concerned about taking morphine because of its associations with illegal drug abuse, addiction, and belief that it is very powerful. In practice these worries are unnecessary, morphine is a safe drug when used as prescribed, an effective painkiller that does not usually cause addiction when used for pain, and should always be started in a low dose and only increased if necessary.

 

Medications
Morphine is usually commenced in a quick acting oral (by mouth) form, this may be liquid (Oramorph) or tablet (Sevredol). Patients are advised to take a dose every 4 hours if they have pain; after a few days the usual daily dose can be converted into a once or twice a day longer acting preparation and taken on a regular basis (e.g. Zomorph, MST etc). In the event of pain occurring in between the regular doses, patients are usually advised to have some oral morphine liquid or short-acting tablets to use – this is referred to as the ‘breakthrough dose’ for ‘breakthrough pain’.

Although morphine is an excellent drug it is not effective for all types of pain, other opioids (morphine-like drugs), such as methadone, may be more effective. Sometimes it is helpful to take regular paracetamol or ibuprofen as well because these have different modes of action on pain. In cases where there is involvement of nerves the pain may not respond completely to opioids and it may be helpful to add different types of medication. Some drugs usually prescribed for either epilepsy or depression have unique pain-relieving properties and can alleviate ‘nerve pain’. Palliative medicine teams and pain specialists can advise when pain is not responding to medication and in some cases specialised pain control techniques are necessary. A TENS (transcutaneous electrical nerve stimulator) machine may be useful.

If patients are unable to take medications by mouth it is possible to administer them in a daily infusion through a needle just under the skin via a syringe driver. This is a small battery-operated pump that slowly expels the infusion of medication from a syringe. This is a safe and effective method of delivery and many patients use this at home. The drugs are renewed, usually daily, by nursing staff. Alternatively one opioid, fentanyl, can be administered as a patch stuck onto the skin, this has to be changed every 3 days.

 

Alternatives to medication
Occasionally it may be necessary to use techniques that destroy nerves that are particularly troublesome. These can include nerve blocks, spinal or epidural infusions of painkillers, and destruction of spinal cord nervous tissue by a technique called percutaneous cordotomy.

A procedure called a Percutaneous Spinal Cordotomy may help relieve pain that has not responded to conventional pain medicines. The procedure involves heating some of the pain nerves in the spinal cord that transmit pain information to the brain. It involves placing an electrode (about the size of a blood test needle) into these pain-carrying pathways, using special x-ray guidance. It is done under a local anaesthetic; the patient is awake so that they can communicate any sensations felt during the procedure.

Patients who have been treated with this procedure can gain long-term pain relief (months to years). Sometimes the procedure can be unsuccessful because the pain nerves cannot be identified safely. Any risk should be discussed with the doctor. There are currently four centres offering a Percutaneous Cordotomy service to patients – these cover the South, North, North-West and Midlands. They have all agreed to have their details circulated.

 

Mesothelioma UK recommends that patients discuss the appropriateness of this procedure with the doctor or hospital team who is currently caring for them.

The centres listed below currently offer percutaneous spinal cordotomy. If you would like information on how to refer someone for a cordotomy please call our Freephone Information Line on 0800 169 2409 or email info@mesothelioma.uk.com.

Dr Margaret Owen (Consultant in Anaesthesia)
Beatson West of Scotland Cancer Centre, 1053 Great Western Road, Glasgow G12 0YN

Tel: 0141 301 7042

Dr Mahohar Sharman (Consultant in Pain Management)
The Walton Centre for Neurology and Neurosurgery NHS Trust, Lower Lane, Liverpool, L9 7LJ

Tel. 0151 529 8294 (Pain Clinic) or 0151 529 2098 (Aintree Palliative Care Service)

Mr Nik Haliasos 
Cordotomy Service (Functional Neurosurgery Unit), Essex Neurosciences Centre, Queens Hospital, Rom Valley Way, Essex, RM7 0AG.

Tel: 01708 435 000 Ext. 2658
(Secretary Claire McManus)

Self Help Techniques

Breathing is often easier if the person sits up and leans forward with their arms supported, for example on a table.

Standing and leaning forward can also help.

Sitting at a table with head resting on pillows or forearms or standing upright, hips and back leaning against a wall may also help.

A fan may also help by blowing cool air onto the face. Similarly sitting by an open window often helps.

The use of oxygen is not usually required unless specifically recommended by a doctor. In the majority of cases a flow of cool air works just as well.

Breathing control techniques can help patients to regain a sense of mastery over distressing shortness of breath. These simple techniques can be taught by physiotherapists, some Macmillan or lung cancer nurses, palliative medicine or hospice teams or through ‘Breathe Easy’ groups run by the British Lung Foundation.

Breathlessness can make people anxious. If anxiety is severe it can make the breathlessness worse. In addition to learning breathing control, a light sedative available such as lorazepam or diazepam may help. Relieving anxiety also helps to relieve muscular tension in the chest wall w affects breathing.

Relaxation exercises, self-hypnosis or visualisation are techniques that can also help patients deal with breathlessness – they are often taught by complementary therapists and advice can be obtained from Macmillan nurses, palliative care teams or hospices.

Fatigue

What is it?

Feeling tired and lacking in energy are common symptoms in all cancers. Sometimes there are easily treatable causes such as anaemia that can be detected by a blood test.

Sometimes fatigue is related to the effort of breathing – please click here for Breathlessness section for advice.

Cancer-related fatigue sometimes improves with attention to nutrition as many patients experience loss of appetite – please click here for Loss of Appetite and Weight Loss Section.

 

How can it be managed?

In some cases a trial of steroids is appropriate. Learning to slow down and pace activities and making life easier by the use of aids and appliances in the home or practical adjustments such as bringing a bed downstairs may help to conserve some energy. There is currently a great deal of research into this problem.

Loss of Appetite and Weight Loss

What is it?

These can be very common symptoms of mesothelioma and advice from a dietitian may be helpful. Nutritional supplements, (particularly those containing fish oil derivatives such as Prosure), may help in some cases but it is unhelpful to try to force food into someone who is either feeling sickly or has no appetite.

 

How can it be managed?

Occasionally medication can be used to stimulate appetite – steroids can do this: either prednisolone or dexamethasone in the short-term, or megesterol acetate (Megace) which takes about three weeks to work but can be continued if effective.

The loss of a healthy physique can be extremely distressing, particularly for people who have previously been physically fit and active. Eating little and often may be much more successful than trying to keep to three meals per day.
Tastes commonly change, for example, patients may find that they tend to prefer more sweet foods than they have done before – this does not matter but means some dietary changes may be necessary in order to maximise the amount of food eaten. Oral thrush, a common mouth infection, may alter taste or cause a sore mouth that reduces food intake; it is easily treated with nystatin or fluconazole.

For more information, including meal plans, see the Mesothelioma UK booklet “Diet and Mesothelioma”

Sweating

What is it?

Sweating is common in many cancers – it may result from chemical agents produced by the tumour, emotion, infection or medications such as morphine in some people. Simple measures such as loose cotton clothing and bedclothes and use of a fan will help. Alternatives to morphine may be tried. It is important to exclude chest or urinary infections as sweating due to either of these would respond to antibiotics. Some people experience drenching sweats, often particularly troublesome in the night. It can be exhausting for patients and their carers to be woken by sweats, simple measures such as loose cotton clothing and bedclothes and use of a fan will help.  A number of drugs can be tried although success can vary.

Constipation

What is it?

Medication, poor food and fluid intake and lack of physical activity can result in constipation. Preventive measures such as attempting to drink extra fluids may help but when medication such as strong painkillers are being taken it is almost inevitable that constipation will occur and therefore essential to avoid this by the regular use of laxatives. A large variety of preparations are available and doctors and nurses can advise on the most appropriate medication.

Nausea and vomiting

What is it?

These symptoms may occur in mesothelioma and are common side effects of chemotherapy and other medications, particularly some painkillers. Careful assessment is necessary in order to tailor the appropriate medication to the individual situation. If a patient is vomiting or even feeling nauseated they are not able to absorb their usual medications and it may be necessary to give these by injection or via a syringe driver (see above section on pain) until the nausea and vomiting has been controlled.