Lifestyle & symptom advice - chemotherapy

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This information sheet aims to provide a brief overview of the practical tips which may help prevent and cope with some of the every day issues which may confront you during treatment. By mentioning these side effects here it doesn't necessary mean you will get them - the likelihood of side effects for each regimen is best described in its own individual chemotherapy advice sheet.

Nausea remains a relatively common side effect of chemotherapy but with the advent of new anti-sickness drugs vomiting is unusual.  It is important to treat vomiting actively as prolonged vomited leads to further problems. It is always best to prevent nausea so it is important to take your anti-sickness tablets regularly. If they fail and you actually vomit it is important you get other forms of anti-sickness medication quickly from your oncology clinic or GP. 
Some practical tips if you feel sick:-

Fluids:

• It is important to keep your fluid intake up to prevent dehydration; 
• Clear, cold drinks (water) may be better tolerated.
• Try sipping fizzy drinks such as soda water, ginger beer or lemonade
• Sip slowly, using a straw may help
• Herbal, ginger or peppermint tea may soothe an upset stomach 

• Start with small frequent meals and snack then build up to your more normal diet
• Eat slowly and relax afterwards, but avoid lying flat .
• Try not to drink with a meal, but have one 30 minutes before or after.  
• Nausea may become worse when the stomach is empty so try to take regular  snacks.
• If possible, a short walk in the fresh air before eating may help.  
• Fresh air also helps to stimulate your appetite . 
• Avoid wearing tight fitting clothes . 
• Avoid highly spiced or rich or fatty foods if this makes you worse. 
• If the smell of cooking makes you feel nauseous you could try eating cold foods
• Cold food examples include sandwiches, meats, chilled desserts e.g. yoghurts. 
• Let a friend or relative cook if they offer.
• Try to relax and eat slowly in a well ventilated room.

• Your Doctor can provide further anti-sickness (anti-emetic) tablets if your symptoms persist

Fatigue. The most common complaint during chemotherapy is now fatigue. The severity of fatigue can vary from mild to a level which severely disrupts patients ability to cope at home and work. Fatigue can also be aggravated by a drop (particularly if sudden) in you red cell (haemoglobin). In this case specific treatments for anaemia should be considered. Here are some tips to help you with fatigue:-

Eat a healthy, balanced diet. Foods which give you sustained energy such as carbohydrates (bread, potatoes) are important.  Avoid refined sugar in foods producing peaks and troughs in glucose levels.

Rest - Periods of rest or cat naps are beneficial taken throughout the day between activities

Exercise - Regular aerobic exercise has been shown to prevent worsening of fatigue and psychological stress in patients receiving chemotherapy and biological therapies. In the studies which showed this, the definition of aerobic is exercise in which a negative oxygen balance does not occur or put another way it is not too strenuously that it uses up more oxygen in the blood stream than can be replaced by breathing, albeit at a faster pace – this generally would include walking, gentle running, dancing, cycling, rowing etc. 

Distraction tactics - Listening to stimulating tapes or music. A drive for a change of scenery or a visit to friends or family are examples of diversionary activities. Try to keep a comfortable temperature and avoid being too hot or cold.

Sleep hygiene - Try to get the most of of a nights sleep. See advice on sleep hygiene for some tips.

Task management - You cannot now do everything yourself. Organise family and other carers including social workers to help you with daily activities especially the heavy one

Infection and a low white cell count  Infection due to a low white cell count  remains an important cause for concern for our patients. You should have been given advise on what to look out for and what to do if you develop an infection, including 24 hour contact numbers. 
Patients often ask what they can do to prevent infection. Unfortunately, this often out of the control of an individual patient as it is difficult to avoid people who have infections (colds, flu, chest infections etc) and there is no evidence to suggest this makes any difference. Common sense tells us however, that if its obvious that a person is unwell with infection avoid close contact. Also avoid foods which may be infected - see below. Special note has to be made regarding:

Chicken Pox and Shingles - If someone has chicken pox avoid them altogether - If there is a significant contact with chicken pox contact the hospital. If they agree the risk is serious they will take a blood test to assess your immunity to chicken pox  - if you still have immunity no more needs to be done if it has been lost you may receive a course of chicken pox anti-serum. (For Bedford the contact numbers are nurses 01234 792651, reception 01234 792652; outside clinic hours attend the A&E's where a blood test will be taken)

Growth factors (e.g. Neupogen, Neulasta) are sometimes used, as well as antibiotics, to treat prevent infection and increase the white cell count ready for the next cycle. This usually involves a subcutaneous injection given once or up to 10 consecutive days after the chemotherapy administration. These can cause additional aches and pains in the bones. Many patients learn to self inject these them instead of having to wait for the district nurse to visit. 

Diet and chemotherapy As a general rule it is important to maintain a healthy diet and lifestyle during chemotherapy. Make an effort to increase the amount of fresh fruit and vegetables (washed). An exception being if you are taking  chemotherapy agents (eg 5 fluorouracil, irinotecan) that can cause diarrhoea - in that case the amount of fibre and fruit may need to be reduced while your have diarrhoea. 

For standard chemotherapy regimens no specific dietary measures are required.   However, it is generally important to avoid foods which are likely to contain infective materials.  The risk of infection also depends on how foods are prepared.  More care needs to be taken when eating out and to ensure all foods have not passed their shelf life. In general dry food e.g. biscuits, breakfast cereals, can be resealed or stored in a sealed container for up to one week.  Whereas moist foods e.g. milk, desserts - should be refrigerated and consumed within 24 hours.   These foods are only a guide and it is still important to maintain an adequate level of nutrition

Extra care needs to be used when receiving chemotherapy regimens which are likely to cause a prolonged period of a low white count. While the neutrophil count is low, the body is more vulnerable to infection (i.e. neutrophils <0.5). A detailed detailed dietary advise sheet    is available in this situation.

Hair loss  Some chemotherapy agents do cause hair loss. You will be told the likelihood of this happening to you It usually starts 3-4 weeks after the first course and may be lost completely. You may also experience thinning and loss of eyelashes, eyebrows and other body hair. This is temporary and your hair will re-grow after treatment, although it may at first be a different texture, very like a baby's hair. Some departments use a cold cap system to minimise hair loss. Your clinic nurse can arrange for you to have a wig before your treatment starts (NHS prescription charge, prices are approximately £55 for an acrylic wig, £140 for half real hair wig and  £205 for a full real hair wig). 
Some tips for coping with hair loss include:-

• You can ease the pull of long hair by having it cut into a shorter style before treatment.
• Avoid using harsh chemicals and shampoo as these can cause the scalp to become dry and itchy.
• Try switching to gentler products.
• Do not perm you hair for at least six months after your treatment.
• If your scalp does become too dry you can gently massage it with a light moisturizer.
• Use a soft hairbrush to prevent irritating your scalp if it is tender.
• Avoid nylon pillowcases as they can irritate the scalp. Use cotton as an alternative.
• Let your hair dry naturally as hairdryers and rollers can further damage brittle hair. 
• Avoid sleeping with hair rollers in place.
• If you have lost underarm hair, try not to use deodorants and use unscented talcum power instead.

Mouth care You may have a sore mouth after chemotherapy or radiotherapy and it is important that you maintain good oral hygiene. 
Some tips to prevent mouth problems include:

• Clean teeth thoroughly but gently after each meal and before going to bed. If the gums are delicate it is better to use a soft toothbrush (baby/infant).
• Brand name antibacterial mouthwashes such as Corsodyl may be used but are quite strong and may damage the fragile lining of your mouth whilst on treatment. Check with nursing staff for further advice. 
• Saline mouthwashes are recommended if tolerable; 5 mls salt: 500 mls tepid water; 1 tsp. salt: one pint tepid water.

 Some tips to treating a painful mouth include:

• Saline mouthwashes (see above) - Use two tablets in tepid water, swill around the mouth for two to three minutes but do not swallow. Useful before meals but it is best not to eat or drink anything for 10 minutes after using the mouthwash, to gain maximum effect from it. May be used frequently during the day, provided they are not swallowed. 
• Soluble Paracetamol mouthwash/gargle.
• Sore lips may be helped with Paracetamol mouthwash. 
• Vaseline is also useful to prevent dryness and cracking. 
• Painkilling brand name mouthwashes, e.g. Difflam may be useful but please check with nursing staff before using as some consultants prefer not to prescribe them. 
• In some cases you will be advised to suck ice/ice-lollies immediately prior to and during chemotherapy. This is to reduce damage from certain drugs.  
• Suck sugar free sweets (be careful too many cause diarrhoea). Be careful with boiled sweets in case they cut your mouth.
• Spicy, acidic or salty foods can be uncomfortable. 
• A yougurt with a meal is useful lubrication.
• Use plenty of fluids, e.g. gravy, sauces, melted butter or margarine to keep foods moist.
• Aim for small and frequent meals, i.e. take something nourishing every 2 hours if you cannot manage large meals.
• Have soft foods or cold foods.
• Supplement your diet with Complan or Build Up.
• Avoid tobacco and alcohol.
• Avoid wearing dentures. 
• If the above measures are not helping the pain, contact for oncology team -. You may have an infection  or you may need stronger pain- killers which the doctor can prescribe. 

Your veins Three types of damage can occur, The first two are relatively common and although annoying are not particularly serious. The third called extravasation is urgent and should be taken very seriously

• You may experience darkening of the veins in your hands and arms. This is normal, usually doesn't hurt and should fade once your course of treatment has been completed. Very gentle massage with natural oils is sometimes helpful combined with regular exercise of the hands an fingers (ie opening and closing a fist and with the hands flat, opening and closing the fingers)

• Towards the end of your chemotherapy course, some veins may feel hard and 'cord-like'. In these veins the blood has clotted (superficial thrombosis) which may take several months to resolve. Your doctor may recommend a low dose of aspirin (ask before taking it yourself).

• These chemotherapy drugs can cause irritation and tissue damage if they leak out of the vein whilst injected. This is called extravasation. All nurses who administer chemotherapy have completed an intensive training programme and are fully aware of what to do if extravasation occurs. Rarely problems can start after you have left the Hospital. Look out for pain, stinging or burning sensations, redness or swelling around the area where the chemotherapy was given. If you notice any of these symptoms after you have left the Hospital, contact the emergency numbers you have been given. In the meantime, keep the arm raised and place a cool (not ice) pack on the area.

Sexual issues  For pre-menopausal women, chemotherapy may affect your periods. They may become heavier, lighter or may stop. In some women this may be permanent causing menopausal symptoms.  You should not become pregnant during chemotherapy, as chemotherapy will damage a growing baby. You should still take contraceptive precautions even if your periods have stopped, as you could still become pregnant. It is not possible to catch cancer from your partner during sexual contact.

Exercise  It is a misconception that exercise should be avoided following a diagnosis of cancer. There are several good reasons why exercise is often helpful.

Cancer and certainly its therapies often cause fatigue. Light and stimulating exercise can help to reduce this. This has to carefully balanced. Although plenty of rest is important, between these times it is better to be active. For example a sleep after lunch may be required but then it would be useful to put on a pair of training shoes and go for walk in the open - preferably in pleasant stimulating surroundings such as a park or riverbank. Although this seems a great effort at first, patients often find their overall levels of fatigue are reduced.  

Cancer and its therapies increase the risk of thrombosis - particularly if there is any disease in the pelvis or lower abdomen. On top of this if patients are less active this further increases the risk. Regular exercise cause the blood to be pumped through the veins and reduce the risk of it stagnating and clotting in the veins.

The steroids often given with cancer therapies can often cause osteoporosis ( thinning of the bones). Exercise by far is the best way of keeping the bone strong and healthy.

Steroid can also cause muscle weakness - again light exercise can make the muscles stronger.

Many patients (particularly women) put on weight during cancer therapies. Steroids are one reason, hormone therapies such as tamoxifen are another. Both are exacerbated by  lack of exercise. Clearly regular light exercise will reduce the risk of weight gain.

Nausea can be a problem with some cancer therapies. If it is mild sometimes an walk or gentle run can do wonders.

Your Bowels Some patients experience constipation which may be due to the anti-sickness tablets. You should drink plenty of fluids, eat a high fibre diet and take gentle exercise. If this is severe you should contact your clinic or GP. Other chemotherapy agents can cause diarrhoea - it is important to know if this is likely to happen to you - in this case the amount of fruit and vegetables will need to be reduced if diarrhoea develops. As a general rule don't cut back on fruit & veg. until diarrhea develops.

Sleep Normal sleep can be disturbed during chemotherapy. Patients understandably worry at night and often chemotherapy is given with steroids (eg Dexamethasone) to help prevent sickness.    Steroids often cause wakefulness and sometimes agitation. Try to keep a regular sleep pattern. 
Some tips to help sleep:

• Discontinuing or reduce the use of caffeine, alcohol and nicotine.

• Avoid drinking large amounts of liquids prior to bedtime

• Avoid hunger or excessive eating prior to bedtime

• Avoid taking daytime naps.

• Establish a regular pattern of sleeping - set a time to go to bed & when to wake up.

• Sleep only as much as you need to feel rested.

• Go to bed only when you are sleepy

• If you are unable to fall asleep within 20 - 30 mins leave the bed and
  perform a relaxing activity until drowsy and ready for sleep.

• Exercise routinely but do not exercise within 3 hours of bedtime.

• Engage in a quiet relaxing activity before bedtime

• Do not watch TV or read in bed

• Avoid temperature extremes, noise and light when in beds.

• Ensure room is dark - use black out curtains if necessary 

Risk of Blood Clots Patients with malignancy have an increased risk of blood clotting in their veins (thrombosis). The most common veins affected are those in the back of the legs causing a deep vein thrombosis (DVT) but blood can clot in other veins around the body. This tends to cause swelling, redness and discomfort in the area. More, worryingly, particularly in those patients with pelvis, recent surgery or immobility there is a risk that a clot can break off and spread to the lungs (pulmonary embolus) leading to chest pain, breathlessness, coughing up blood and collapse. This is a very serious condition and can permanently affect the function of the lungs or even be fatal so if you have any of these symptoms contact you cancer unit or emergency department immediately. Although strategies such as compression stockings and treatments such as warfarin and low molecular weight heparin are essential, lifestyle factors can also reduce the risk of this life threatening complication.

Some tips to help avoid clots:    

• Stop smoking (if relevant)

• Avoid long periods of immobility (one memorable patient recently developed a pulmonary embolus after being stuck on a motorway in a traffic jam!)

• Avoid being overweight - of course, very little can be done to achieve a substantial weight reduction but try to walk briskly at least 20 minutes every day

• Exercise - It’s important to get the blood pumping as much as possible through the veins. General exercises such as walking, running, cycling and dancing as will increase the blood flow but exercising the arm and hand is even more important.

• Ask your doctor if you could take a low dose of aspirin  

Working during treatment Some people like to carry on working during their treatment, either full-time or part-time. Some people need to carry on working as much as possible for financial reasons. Before treatment, it is often difficult to know exactly how the treatment may affect you and it is helpful to let your employer know this, so that they are aware you may need to change your work plans at short notice. Some people choose to give up work completely during their treatment but this depends on many factors including you side effects, treatment logistics, type of work and motivation to work.

You may also need to take time off during your treatment. This time off may be taken as sickness absence, or an agreed reduction in working hours or days per week. If this is the case you may need details regarding  sick pay and benefits. It is helpful to talk about your need for time off with your employer so that they can support you in the best way possible.

If you are self-employed and you cannot work due to illness, you are entitled to Incapacity Benefit as long as you have been paying the correct national insurance contributions.

There are specific rules for calculating the income of self-employed people and entitlement to certain benefits differs from that of an employee, especially in the case of Jobseeker's Allowance and Income Support. Depending on your particular circumstances, the benefits you may be eligible to claim include Housing/Council Tax Benefit, Working/Child Tax Credits, NHS Benefits, Incapacity Benefit, Disability Living Allowance, and Attendance Allowance. The Department for Work and Pensions can give you information about benefits you may be entitled to claim.

Driving  In general most patients can drive during chemotherapy and radiotherapy with some notable exceptions:

 If you are a professional driver, (i.e. HGV, PSV(Bus), Taxi, Fireman, Policeman or Ambulance driver), you may not be allowed to drive. This may be a temporary  ban while undergoing treatment or a permanent ban due to the site of your cancer. Please ask your doctor or a member of the Primrose Oncology nursing staff if you are unsure.

Driving for personal use is allowed for most people with cancer. The exceptions are if you have a brain tumour, brain metastases or are prone to fitting, when driving may be banned permanently or for a given period of time. This is a regulation made by the licensing authorities, not a decision made by the doctor. Driving under the  effects or side effects of a drug, in particular Morphine, is an offence. Occasionally the DVLC will allow a patient to drive if they are on a stable dose but permission must be obtained from the DVLC.

If the doctor advises you not to drive, please take his/her advice and bear in mind that if you ignore this advice your driving will not be covered by your insurance policy. Also your driving insurance premium may be raised. This will depend on the site of your cancer - Driving insurance will be refused if you have been advised against driving.

Travel If you are planning a holiday please discuss it with your doctor. For detailed information refer to our travel advice sheet.

• Some treatments can be adjusted to take account of this, but others cannot.

•  Some treatments may put you at risk of infection and would be best advised to not travel outside of the UK.

•   Speak to your doctor in clinic.

Travel insurance Some high street travel insurance companies will give you medical insurance as long as you have a certificate from your doctor saying you are fit enough to travel. You should be able to make claims on your insurance for emergency medical care abroad, even if that treatment is necessary because of your cancer. But to claim, you must have told them about the cancer when you applied for the cover.  If they have knowingly taken this risk, they must pay according to the policy.

If you have had treatment for cancer during the 12 months before your trip, many high street travel insurance companies will only insure you for treatment or emergencies unrelated to your cancer.  So you can get travel insurance, but if you need treatment as a result of the cancer, you will have to pay for it yourself.

You should be able to claim for emergency medical care abroad, even if that treatment is necessary because of your cancer.  Again, this depends on you disclosing your medical history fully to the insurance company when applying for the cover.  If they have knowingly taken the risk, they must pay according to the policy.

The policies of travel insurance companies can be many and varied: some offer more appropriate cover than others.  Be sure to shop around and check your policy carefully.

Holiday insurance can be a problem as many policies will not cover you for an existing illness, even if you feel well enough to travel. This may affect the cancellation cover and cover for sudden illness while you are away.

Financial issues and Insurance Existing mortgages and house insurance premiums are not normally affected by having cancer. If you are hoping to take out a new mortgage  then the Bank/Building  society may require further information about your cancer and treatment before giving you a loan. Obtaining new Life Insurance may be difficult so you are advised to discuss this with your doctor before applying.  

Sore eyes; The front of the eyes (cornea) can occasionally feel dry and sticky, especially first thing in the morning. This usually comes on later in the course and can cause some redness and discomfort. Eye drops such artificial tears can be bought over the counter or prescribed by your medical team. 

Nails; The grow of the nails can be impaired by chemotherapy. The amount of damage can vary but in most case there will be some slight discolouration and indentation seen in ridges across the nail beds - a bit like the rings of a tree, each representing an individual chemotherapy cycle. Occasionally the damage can be more troublesome, causing pain and breakdown of the nail bed causing it to lift and separate, possibly even leading to a total loss of the nail. Eventually after chemotherapy has finished the nail will grow back normally.