Coping with chemotherapy
Most patients with cancer receive some form of chemotherapy (and or radiotherapy - most of what is said below can equally apply to radiotherapy.)
Because cancer cells initially derive from our normal cells, drugs which kill or affect the cancer cells are very likely to damage healthy cells as well, creating side and toxic effects.
Obviously, each type of chemo will have different side effects, so not all of those mentioned below will apply.
Undergoing chemotherapy can be very stressful both for you and your relatives, and having a positive approach, and some techniques to help with the side effects can make a big difference.
Remember the aim of the chemotherapy is to create health and wellbeing in the longer term, and although the effects in the short term can be disturbing, look through it towards an optimistic future. A positive attitude not only helps people to cope with adversity, but has also been shown to hugely aid in recovery.
Steps everybody should be taking:
- Be absolutely certain in your own mind that you need to be taking the chemotherapy, and discuss this with your doctor. If you have negative thoughts towards it, it is much more likely that you will get side-effects.
- Mind and body medicine – this is extremely important both in the treatment of cancer (people who believe they will get better very frequently do) but also with side-effects. Meditation, prayer, relaxation etc. can all make symptoms less unpleasant or disturbing.
- Do not totally rely on yourself, talk about your feelings and side-effects with others, friends, professional counselor, your health professional, priest or some similar person. Also tell your partner about the side-effects, usually they will find out, and if you have not shared they will be watching you continuously to see if you are unwell. Be open with them.
- Nutrition is crucially important with chemotherapy, poor appetite, changes in taste, nausea and vomiting can affect food intake, this leads to both weakness and lesser ability to cope. Almost 40% of cancer patients die of malnutrition not of the cancer. Eat as well as you can, often nutritious shakes are easier than solid food, and it is also easier to graze throughout the day, rather than 3 major meals. You will have been told foods that are good or bad for cancer, while you are having chemotherapy, nutrition is so important it is probably better to eat what you feel like.
Nutritional supplements particularly a multivitamin and multimineral, fish oils and maybe calcium and magnesium are essential to help the body fight the cancer, and give it strength. Because of the toxins produced both by the cancer and the chemotherapy, the liver is working overtime to detoxify, and a liver support supplement containing more of the nutrients the liver needs to detoxify can be helpful.
- Fish oil supplements - there are many reasons cancer patients lose weight. Omega 3 fish oils appear to reduce the weight loss and improve the clinical outcomes. Take at least 1.5 grams per day.
- Drink 2 to 3 L of fluid daily, as dehydration can damage the kidneys. Drink regularly through the day, and when you wake up at night. Some people find that water from the fridge, sparkling water, soda water, water with lemon added, or ginger ale is easier to drink.
- Get a good nights sleep – this is the time the body is recovering, and a good sleep is important. Melatonin not only has an anti-cancer effect, but also helps with sleep. Other people may need a sleeping tablet (zopiclone) to help them over this time.
- Listen to your body – don't try and be brave and put on a false face. If you feel tired have a rest or a sleep. A cup of tea or coffee after asleep can also revitalise you.
- Exercise – this is very beneficial for both the body and mind, go for regular walks if you can. Uplifting areas like the beach and woods or in the park are even better. Be mindful and enjoy and appreciate nature. Grounding – walking with bare feet on grass or sand is reputed to give the body additional energy from the earth.
Exercise moves the blood and lymph around the body and helps in detoxification improving your sense of well-being.
- Infections – many anti-cancer treatments affect the immune system and the white blood cells. Personal hygiene needs to be perfect especially around toilets, wash your hands carefully and open the toilet door with a hand towel or paper (the last person may not have washed their hands). Avoid touching banisters and escalator handholds if you can, and carry a hand sanitiser. Always wash your hands before touching any food or your mouth.
Avoid situations where you could catch infection, keep away from people who are sick and avoids large crowds especially in enclosed spaces. Also recently vaccinated children (especially polio, chickenpox and measles, where live attenuated viruses have been used). If you go to the cinema choose unpopular times, and sit away from people.
Look after your mouth and teeth, brush your teeth regularly with a soft brush, consider using mouthwashes as well. Some people prefer to use water jets rather than flossing if this causes bleeding.
- Look for things that make you feel better – a good regular massage, acupuncture, osteopathy, movies and try and bring as much enjoyment into your life.
Specific side-effects and what you can do to help – these are in alphabetical order.
Bleeding and bruising – chemo often affects the clotting factors especially the platelets. If these get very low tiny red spots can develop on the skin. Just a few are okay, but if they are obviously increasing, discuss this with your oncologist, GP or cancer nurse.
If bleeding does occur, use a pressure bandage over the bleeding area and if possible elevate the bleeding part above the heart. For nosebleeds pinch the nose just below the nasal bones and maintain steady pressure for some time. It is better to sit up rather than lie down, a cold flannel over the base of the nose or on the forehead may help, and if it persists go to the A&E department.
Chemo brain – many people notice a change in their concentration and memory during chemotherapy. This nearly always stops when the chemo is finished. It can affect people's ability to do their job, their judgment and sometimes driving. If there are very important decisions to be made, you need to discuss these with somebody else just to make sure that you are thinking as clearly as you should be. Some people feel as if they're in a fog (brain fog), words can be lost, memory particularly short term can be affected and it is often harder to make decisions. Multitasking is more difficult, although this shouldn't be a problem with men! It's important to realise these things and take life slower.
There are no drugs that make much difference, caffeine in tea coffee and some healthy energy drinks may help a good multi with plenty of B vitamins might be beneficial, and there are rumours that coconut oil can help patients with confusion with Alzheimer's, whether it helps with chemo brain we do not know. Low blood sugar can aggravate the situation, and a low glycaemic snack where the sugar level rises gradually can give an energy boost.
Cranial osteopathy, healing touch, Yoga, acupuncture may all improve clarity and may be worth a try, and it's best to reorganise your life to make it relatively simple.
Constipation – chemotherapy itself may cause this, but it is usually due to a poor food intake especially insufficient roughage and fibre. Sluggish bowel movements mean toxins are often reabsorbed, making you feel even worse. Plenty of fibre in the diet is important (fruit, nuts and vegetables), and it is worth adding a fibre drink as well on a regular basis, probably best taken at night. Check with your doctor that none of the other drugs might be causing constipation. Drink plenty of fluids, fruit juices, prune juice; and regular exercise can often keep the bowels moving. Occasionally drugs and micro enemas may be needed.
Cramps – cramping of the muscles in the hands in the feet and the legs are very common especially if the chemo is affecting the nerves and you notice pins and needles or numbness (peripheral neuropathy). Sometimes this can be helped by taking high doses of magnesium (magnesium 800 - 1200mg a day) fish oils (1 to 2 g daily). Be careful as some magnesium tablets come with calcium, and in some forms of cancer (e.g. breast cancer) high calcium levels may not be desirable. Also a good multivitamin, that contains plenty of the B vitamins.
Some drugs can help cramp, quinine has toxic effects and should be avoided especially with chemotherapy. If it is a real problem, other drugs have been suggested including calcium channel blockers (diltiazem or verapamil) gabapentin, and diphenlyhydramine.
Forcibly stretching the muscles particularly in the legs can often relieve cramp. Walking or leg jogging followed by leg elevation, a hot shower with the water directed at the cramp area, for about 5 minutes, or a warm bath tub or spa, or an ice massage – what helps best is a trial and error process.
Sometimes riding a stationary bike for a few minutes before bed, keep the bedcovers at the foot of the bed loose and not tucked in.
Sometimes cramps can be due to changes in the electrolytes or dehydration, and get your doctor do a blood test to check this.
Diarrhoea – this can be a side-effect of the chemotherapy, check with your doctor. Many people are treated with antibiotics, and some are on permanent antibiotics during chemotherapy (e.g. co-trimoxazole for PCB infection) all of these can change the bacteria in the bowel. Taking a regular probiotic can help avoid this.
Sometimes avoiding cow’s milk which contains lactose which is more difficult to digest can help, and some are helped by digestive enzyme supplements. Other foods that should probably be avoided are spicy foods, alcohol, excess caffeine containing foods and some fruit juices such as prune and orange juice.
Drink 8 to 10 large glasses of clear liquids per day (e.g. Gatorade, broth etc.) eat frequent small meals (bananas, rice, applesauce, toast, plain pizza)
Unfortunately chemotherapy and radiotherapy can damage the cells of the bowel wall leading to diarrhoea, and medication may be needed to assist with this. Diarrhoea can also cause dehydration and it's important to keep the fluids up. Flatulence (the need to either belch or fart) is quite common and it is more comfortable out than in.
Sometimes taking soluble fibre shakes can help with diarrhoea, but not always.
Drugs which can help include – Imodium and Lomotil but they should be used with caution. Octreotide can be used in some tumours especially carcinoid.
Dizziness on standing – postural hypotension. This is due to a fall in blood pressure when you stand up. Keeping the BP normal lying and standing is a very complicated process involving the autonomic nervous system, hormones and the kidneys. All of these can be affected by chemotherapy. Many patients on chemo feel lightheaded and dizzy when they stand up after prolonged sitting or lying. It's a good idea to sit for a while if you've been lying down before standing up. When standing lean against something for a while before walking away. This can be made worse by dehydration, and it's important to keep the fluids up.
Get your doctor to check your blood pressure both lying and standing, and make certain that you are not on any drugs which could aggravate the problem, such as diuretics, blood pressure pills and some prostate tablets.
It is often worse in warm weather, and when you get out of a hot shower, bath or spa.
Sometimes wearing supportive stockings or tight garments up to and including the tummy can be helpful. Postural hypotension can be a real problem at night, getting out of bed to go to the toilet. Old-fashioned though it may seem, a bedside commode or potty can fix this problem.
There are drugs which can help hypotension, such as 9-alphafludrocortisone, but it is probably best to avoid these as possible.
Eyes – dry eyes and blurred vision – many people on chemotherapy feel irritated eyes, and although they can cry tears, the eyes can be dry at other times. Quality preservative-free lubricating eyedrops can often make a real difference to this discomfort.
Chemotherapy can affect the autonomic nervous system controlling the function of the eye, and for many people vision is significantly affected. The pupils often don't close down with bright light as well as they should, and this can be unpleasant and can often be fixed by wearing dark glasses.
The lens is also affected and many people find that their vision deteriorates quite significantly. This can often be fixed by wearing glasses, but as the effect is very temporary and can change, it is better to go to the supermarket or chemist and check out for yourself if their cheap off-the-shelf glasses make your vision better. You may even have to buy glasses for reading, and other glasses for driving. When the chemo stops, the vision will change, so don't buy expensive glasses while on treatment.
Fatigue – this is a symptom present in almost all patients with cancer, and chemotherapy frequently makes us a great deal worse. Some drugs such as painkillers, anti nausea drugs antidepressants, cough medicines, sleeping pills and steroids can cause fatigue and your doctor may be able to prescribe less soporific ones.
Check with your doctor to make sure there is no obvious cause for the fatigue such as anaemia.
It is important to get a good nights sleep, make sure that you are prepared for bed, sleep in a quiet comfortable room, correct temperature and ventilation, have bath/spa/relaxation before bed, listing to a relaxing tape or watching enjoyable but not stimulating TV. Sleeping pills can help (zopiclone) but make sure the dose is low because this can sometimes make you sleepy the next day. Melatonin is probably better, and you need to ask your doctor to prescribe this for you.
Gentle exercise (walking on the beach or in the woods, yoga, cycling, lifting weights, waving the arms in bed without exhausting yourself not only helps with fatigue, but is shown to improve the quality of life. It seems oounterintuitive to exercise when feeling fatigued, but many studies have confitmed that regular mild exercise is possibly the best fatigue therapy.
Sometimes tiredness is affected by lack of energy supply to the cells, lack of sugar or fat. Having a meal or an energy bar/ache or even a barley sugar may sometimes be helpful. Eating regular meals through the day (grazing) can also be helpful.
Guarana is a stimulant derived from an extract of seeds from a plant in the Amazon. In one trial a dose of 100mg per day, it significantly improved fatigue in breast cancer patients on chemotherapy.
Ginseng at a dose of 200mg/day in one study did help patients with cancer and chemo related fatigue
Caffeine which is found in coffee, tea and many other beverages (especially the energy drinks) can sometimes be helpful, but don't drink these late at night as it may affect your sleep.
Coenzyme Q 10 is an essential part of the energy pathway, taking the energy from the mitochondria where it is created to the muscle and other cells where it is needed. CoQ 10 levels can be low in many situations, especially with chemotherapy and cancer. A reasonable dose, probably 300 mg a day is necessary. It is also important to make this a high-quality preparation, as the cheaper ones are not absorbed. Other supplements such as l-carnitine, and D ribose have also been used along with coenzyme Q 10.
Omega 3 oils (found in fish oils) may also help - so either eat lots of fish or supplement with 1-2 grams daily of a quality product (make sure it does not contain mercury)
Hair loss – some but not all forms of chemotherapy can lead to hair loss, mostly this will grow back following treatment. Often during recovery, the hair becomes completely different (curly or straight) before returning to normal. Some people hide this with bandannas, scarfs and hats, and it's often a good idea to wear a hairnet at night to catch any falling hairs. Many people choose wigs, and it's not a bad idea to choose one early so you can match your colour and style.
Cold caps - gel filled caps kept very cold with dry ice, worn for some hours before, during and after receiving chemo are believed to reduce the blood flow to the hair follicles, and in some cases have been shown to reduce hair loss. They need to be changed regularly to stay cold and are not comfortable, but for women where hair loss is a real problem, they could be considered.
Remember when going out in the sun that your scalp is a great deal more sensitive, so cover-up your head.
If the hair loss is not complete, be very gentle with that which remains, use baby shampoos and brushes.
Even if the chemo does not cause hair loss, it can affect the type of hair growth and you may need to change your hairstyle for a few months.
Mouth symptoms –
Dry mouth - saliva creation is controlled by the autonomic nervous system which can be affected by chemotherapy. Drinking plenty of water throughout the day, chewing gum, sucking mints can help create more saliva. Frequently people having chemo have an unpleasant taste in their mouth which is aggravated by this dryness, it is a combination of toxins, chemotherapy and the effect on the nerves. Most people find some drink or food can help this, it is worth experimenting (sparkling water may be nicer than still water, ice versus warm etc.). It is a good idea to have a beverage which you enjoy when eating meals to help lubricate the food as it goes down.
Some chemotherapy can cause ulcers and infections in the mouth, it's very important for people with chemo to look after their mouth and teeth, which needs to be checked with your dentist. It is probably best to avoid any major dental procedures, and do tell your dentist and dental hygienist that you are having chemotherapy.
Regular dental cleaning, using a gentle brush is obviously essential, but you need to be careful with flossing, and some people prefer to use a water jet. Discuss with your dentist the best toothbrush, and use an oral rinse following cleaning which can help reduce the bacterial load. Brushing gently on the tongue and cheek's can also reduce some of the bacteria. Removal of dentures is much as possible. Limit diet to food that doesn’t require a lot of chewing, and avoid salty or dry or acidic foods. Rinse the oral cavity (mouth) after each meal
Mouth ulcers can be a real problem, and you need to discuss this with your doctor and dentist about the best mouthwashes to use. Check with your doctor that there is no bacterial or fungal (candida) superinfection. Some drugs which can coat the ulcers such as orabase, diphenhydramine and oral antacids may be helpful but discuss with your doctor. For very painful ulcers, viscous lignocaine may help.
Nausea and vomiting, poor appetite – this can often lead to major weight loss, and is very important to be addressed. It is important to keep your food intake up during chemotherapy, to help the immune system fight the cancer as well as it can. Often this means eating regular small meals throughout the day (grazing); and supplementing these meals with nutritional drinks can often be very helpful. Despite many recommendations on the most appropriate food to eat with cancer, at this time it is better to eat what you feel like. Watching TV while you eat can take your mind off the nausea, and sometimes spicy or more seasoned meals can make food more appetising. If the food tastes metallic some people have suggested eating with plastic spoons and forks. It is also important to keep up with your fluids, aiming for at least 2 or 3 L per day.
Chemo frequently affects the sensation of taste and smell, and food is not as tasty as it used to be. Because of all of the above, it is important to take a regular nutritional supplement (a good multi, and fish oils) to make sure that the body and immune cells had the nutrients they require.
There are also some very good and tasty high-quality meal replacement powders and shakes which can be used.
Some tips to combat nausea – eat the major meal of the day when you feel best, eat slowly and chew the or food well, dry toast and crackers are sometimes helpful, avoid fatty foods. Foods which may help include – ginger, ginger ale, unsweetened canned fruit, bananas, yogurt, ice cream, clear broth, porridge, mashed potatoes, jelly or custard.
Slow deep breathing can sometimes help with nausea and after a meal it is better to sit quietly and avoid exercise for some time. Drink a cool drink with meals, (apple juice, sparkling water, ginger ale etc).
Acupuncture and cranial osteopathy can help some people to reduce the sensation of nausea and both are worth the trial.
Appetite stimulant drugs may be required if this turns out to be a real problem, these can include corticosteroids, progesterone analogues (megestrol), and where it is legal, cannabinoids and synthetic cannabis may help. Interestingly melatonin which can help with sleep, and also has an anti-cancer effect does also appear to reduce weight loss. Ondansetron, metoclopramide and olanzapine can also be used.
Nail growth – often slows during chemotherapy, causing ridges, staining and pitting. Like hair loss, nails will return to normal following treatment. Trim the nails carefully, especially the toenails and avoid athlete's foot. Keep the nails short as the ridges and cracks tend to catch onto fabric and can lead to them splitting. Oiling the nails at night might make them more supple and if the cracks do develop, trim right down to the base of the crack and consider putting a plaster on for a few days. Massage on cuticle cream, trim off loose skin don't pull it off. You can use nail gel hardners which do not damage the nail to help protect the nails, but do not remove with acetone which further dries and weakens the nails.
Neropathy - numbness, pains and pins and needles (peripheral neuropathy) – many patients receiving chemotherapy notice numbness and tingling in the fingertips, the tip of the tongue and also the feet. It mainly affects the sensory nerves, but has little effect on function. Sometimes the sensations can be painful, rather than a nuisance, and if this is so you should discuss this with your doctor to see whether some drugs or alteration in therapy might possibly help. If the numbness is complete, you need to be careful that you don't injure your tissues by touching hot or sharp objects, and also at night you might find your balance can be affected. Make certain there are no carpet edges you could trip over.
In many patients the effects go or become much less when the chemotherapy is stopped, but unfortunately, in some people the effects remain.
These symptoms can often be a lot worse at night, and keeping the sheets and blankets at the end of the bed loose can help, sometimes wearing socks can help, or keeping the feet cool – you need to experiment and find out what suits you. Some people have found that binding their feet with a crepe bandage at night makes them feel more comfortable. There is some suggestion that exercise might possibly help.
Supplements, particularly a multivitamin containing plenty of the B vitamins, omega-3 fish oils, and a good calcium and magnesium supplement can also help. Other supplements that may help are silymarin (milk thistle seed), lipoic acid, curcumin, coenzyme Q10, and magnesium.
There is little evidence that drugs such as antidepressants, pain relieving medication etc. has any benefit.
Cannabis CBD oil, in those countries/areas where this oil is available, is very effective for peripheral neuropathy, taken at night it has none of the 'stoned high that THC produces), but can make a huge difference to the pains and discomfort at night.
Sexual relations – for many people chemotherapy can affect their relationship and sexuality significantly. For men it can cause difficulty with erection and ejaculation, and for both it can reduce the desire. In women vaginal dryness and sometimes inflammation can make sex uncomfortable which can be helped with lubrication. It is also quite common for women to develop thrush infection, and if there is a discharge or sex is painful, have a checkup to make sure there is no infection there.
Remember however that sexual intercourse is only a small part of personal relationships, and that holding, cutting, stroking, showing that you care are in many ways more powerful expressions of love. The need to be held and cared for, even though not necessarily expressed is very important in both men and women during this time.
iIt is also probably best not to use Viagra and similar preparations and these can cause a fall in blood pressure and if the autonomic nerve system is affected by the chemo, the BP results are unpredictable.
It is important to realise that some chemotherapy is excreted in the semen, and it is advisable to wear a condom to collect the ejaculate or withdraw before ejaculation if not wearing one. Most of the sexual problems usually resolve following chemotherapy cessation.
Skin – in addition to affecting the nails hand and mouth, chemotherapy often affects the skin. Some of these are caused by the immune system. Redness, itching, swelling, dermatitis, pigmentation are all quite common. Some drugs also increase photosensitivity reaction, and it's important not to be exposed to the sun too much. The use of oily and soothing lotions can be helpful, wear loose socks or gloves to bed at night over the creams. Use mild soaps, and avoid products containing parabens, alcohol and perfume. A good supplement particularly a multivitamin containing plenty of B vitamins and fish oils, may be helpful. Because you are avoiding the sun, and the importance of vitamin D in preventing and treating cancer is well known, supplemental vitamin D 6 to 8000 international units per day seems a good idea.
Sleep problems – increasing restlessness and difficulty in sleep are quite common, especially in people receiving corticosteroids (prednisone, dexamethasone). Many people find they have very vivid dreams, and it is reassuring to know that these are almost certainly due to the drugs. A good nights sleep does make life a great deal more tolerable and comfortable. Watch peaceful and comfortable TV before going to bed, avoid violent programs and those that make you think too hard. Peaceful meditation music in the background before dozing off to sleep can sometimes be helpful. Most people find they sleep better in total darkness, eliminating all light, and electromagnetic fields from TVs, clocks phones etc.
Magnesium can sometimes be very helpful to relax, and an 800 mg supplement taken at night can make all the difference, especially for those who have cramps which are often helped by magnesium replacement.
Melatonin is the body's natural sleep hormone and it is believed it may be beneficial in fighting cancer as well. 2 to 8 mg taken at night can very frequently result in a restful peaceful sleep, although some people do find that melatonin makes them dream. If sleep is a real problem, talk it over with your doctor and he could prescribe a sleeping pill such a zopiclone can tide you over this time.
Temperature and infection – in most cases chemotherapy does affect the immune system and lowers the resistance to infection. This is a major danger and it is essential that a high temperature or persistent feeling unwell is not ignored. It is essential that you have easily available an accurate thermometer to measure your temperature. Because some chemotherapy can actually make you sweat, it is often hard to assess your own temperature. If you have a temperature greater than 38°C, or you're feeling unwell (unexpectedly) then this can suggest an infection and you need urgent treatment. Your oncology team would have given you a letter to take to the emergency department of your local hospital and you should proceed there forthwith, or alternatively contact your cancer nurse or specialist who will almost certainly recommend going to hospital. Do not delay!
Try and stay away from people who have infections and also big crowds, stay away from children who have recently had vaccinations for chickenpox, polio or measles (these are live attenuated viruses), and have somebody else look after the hygiene of your pets. Wash your hands carefully before eating any food or touching your mouth, carefully wash fruit and vegetables eaten raw and be very careful with personal hygiene. Do not squeeze pimples. Use hand sanitisers as much as you can and consider purchasing a pocket spray for yourself.
Urination – many people on chemotherapy find their bladder becomes a great deal more sensitive, and often have a sudden urge to pass urine. It is best not to hang on too long because this can become very uncomfortable. This can be perfectly normal. If there is any blood in the urine (some form of chemotherapy do cause haemorrhages in the bladder), or if it burns when passing urine, this could suggest an infection and it is important to tell your doctor.
Yuck – this speaks for itself. When we realise that most cancers start in a natural organ (breast, colon, prostate, lung....), the metabolism inside a cancer cell is not too different from our own cells. If we give a drug which can damage the cancer cell, it is very likely to affect our normal cells as well – collateral damage. While it may not produce a specific symptoms, most patients receiving chemotherapy say they just feel - yuck.
Chemo created symptoms in addition to all the above – a little bit like the feeling of the onset of the flu, as if somebody tipped an ashtray into your mouth, a change in the taste of food and drink (almost never for the better), lack of energy, lack of clarity, just can't be bothered, and interestingly this can provide clarity on what is important and what is not important in life. Emotions can be affected, understandably depression tends to dominate, but anger, frustration and hurt come pretty close to the surface, and people do need to realise that those on chemotherapy can be pretty close to the end of their tether.