Coping With Hair Loss

Freephone helpline 0808 808 [email protected]

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Coping with hair loss LYM0055/HairLoss/2012v3

Coping with hair lossMany people experience hair loss as a side effect of their treatment for lymphoma. Some men and women find this to be the most distressing side effect they have, particularly because it is so visible. Men can also be distressed by losing their facial hair.

The way you choose to style and colour your hair is often an important part of your identity, so hair loss can affect your self-esteem and confidence.

Being informed, supported and practically prepared may help to make it easier to cope at this emotional time. The information below aims to help you to manage hair loss.

In this information sheet we aim to answer questions you might have about:

● hair loss due to chemotherapy

● hair loss due to radiotherapy

● things you can do before treatment starts

● how you can cope with the hair loss during treatment

● looking after your scalp

● what to do when your hair starts to grow back

● wigs and other headwear

● getting support.

Hair loss due to chemotherapy

Why does chemotherapy cause hair loss?Chemotherapy drugs kill lymphoma cells, but they also affect healthy cells, in particular cells that are dividing rapidly. Hair loss occurs because chemotherapy temporarily damages the cells of the hair follicles in the skin and the follicles are unable to make new hair. Hair loss following chemotherapy is usually only temporary. When treatment has finished the hair starts to grow back. In a few cases hair can start to grow back even before treatment has finished.

‘The main thing women should not forget is, just because you are going through chemotherapy doesn’t mean that you have to stop making yourself look beautiful.’ Lynn.

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Does everyone lose their hair?Although many chemotherapy drugs used in the treatment of lymphoma cause hair loss, not everyone will lose their hair. Sometimes hair can thin rather than fall out completely. Your doctor or nurse should inform you about any possible hair loss before your treatment starts.

Is there anything I can do to prevent hair loss?If you have been told that your treatment will make your hair fall out, you will be unable to prevent this from happening. Some treatments may only cause hair thinning rather than total hair loss. Your medical team will advise you about what is likely to happen to you.

You may have heard of scalp cooling (the ‘cold cap’), which can be used in order to try and stop hair falling out. It works by lowering the temperature of the skin around the hair follicles, which diverts the blood supply carrying the chemotherapy away from the hair. This is only suitable for use with certain chemotherapy drugs and with certain types of cancers – it is not recommended for people with haematological cancers such as lymphoma and leukaemia.

How much hair will I lose?This will vary. Generally people having chemotherapy will lose all the hair on their head but some people will only have partial loss and others none at all. Hair can also be lost from the eyebrows, eyelashes, pubic area and under the arms.

Hair can even be lost from the nose, causing your nose to run. This happens because the hair is no longer present to stop the mucus coming out. This can be a nuisance and it may be helpful to carry tissues or a handkerchief.

Some men may lose hair from their beards and moustaches as well as from their head and many men feel just as anxious as women about losing their hair.

Some people �nd that their hair falls out evenly whereas for others their loss is patchier. Hair that is still growing may become dry and dull and the scalp can become tender.

When will it start to fall out?Hair usually starts to fall out a couple of weeks after treatment has started but this can sometimes start within the �rst few days. This can depend upon the type of treatment you are having. Ask your doctor or nurse for advice. If you want to get a wig to match your usual style and colour of hair it is important to visit the wig �tter before your hair falls out as it is easier to get a much closer match. Trying to achieve this once your hair has gone is much more dif�cult.

Some people like to take the opportunity to experience new hairstyles and colours by trying out different wigs. If money allows, it may be possible to buy more than one wig to enable you to change styles from day to day. People affected by hair loss are only entitled to one NHS wig for each complete course of chemotherapy. Any additional wigs must usually be bought at your own expense.

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How long will it take to grow back?The hair can be very �ne when it �rst comes back, but it will probably grow back to a full head of hair 3–6 months after treatment has �nished. Hair regrowth is very variable between individuals and some people �nd it takes longer than this to grow back. On the other hand, a few people experience hair regrowth before their treatment is even �nished.

Sometimes hair can come back �ner, curlier or even a different colour. This is normal. It usually eventually returns to how it was before treatment, but occasionally the new appearance can be permanent.

Hair loss due to radiotherapy

Why does radiotherapy cause hair loss? Radiotherapy uses high-energy rays which destroy cancer cells. These are like X-rays but given in higher doses. The rays of radiotherapy cause changes to the lymphoma cells, which stops the malignant cells from dividing. However, the radiation can also stop hair follicle cells from dividing and making hair.

Will I lose all my hair?Radiotherapy is a treatment which is delivered to a precise area of the body. When you receive radiotherapy, hair will only be lost from the area of your body which is being treated. Ask your radiotherapist (the person who gives you your radiotherapy treatment) for advice.

When will it start to fall out?Hair loss most commonly occurs towards the end of treatment and then the hair often falls out quite rapidly.

Can I prevent hair loss from radiotherapy treatment?You can not prevent hair loss. Your radiotherapist can advise you about what hair loss to expect. Always discuss the use of any skin or hair-care products with your radiotherapist.

How long will it take to grow back?Hair loss following radiotherapy is usually only temporary. On average it takes 6–12 months for hair to grow back after treatment has finished. Sometimes hair will grow back curly or with a slightly different texture.

‘My experience was not to try and match the wig to my own hair as this was impossible. The best thing to do is to go for a style completely different to your own that suits you and also gives you a boost.’ Lynn

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A few people may experience permanent loss of hair in the treated area. This will depend on the dose of radiotherapy and the risk of this happening should be explained to you before your treatment starts.

Care of your hair and scalp during and after radiotherapy ● It is possible to gently wash your hair but take extra care and avoid rubbing the

scalp near the treated area.

● Talcum powder can be sprinkled into the hair, left for a while and then brushed out. The talcum powder will absorb the grease and relieve the scalp tenderness.

● Take care to follow any instructions given to you by the radiotherapist, nurse or doctor about the use of soaps, shampoos and body lotions because these can cause a skin reaction and make irritation worse.

Looking after your hair and scalp

Before treatmentThe following information on managing hair loss and on how best to care for your hair and scalp applies to people having chemotherapy. Some of the information will also apply to people having radiotherapy to the head and neck area. If you are unsure how hair loss will affect you it is important to contact your doctor or nurse.

● Long hair can be cut shorter prior to treatment. This will reduce the weight of the hair pulling on the scalp and might help reduce or slow down the hair loss. It might also make it easier to cope when the hair starts to fall out.

● Men can shave their beards and moustaches before treatment starts to allow time to adjust to a different look. It can also give you back a sense of control over what is happening.

● Order a wig as soon as possible, ideally before treatment starts. This will allow a closer match to your natural hair colour. Wigs come in many different styles and colours. Some people take this opportunity to explore different looks.

Once treatment starts ● Try not to brush or comb your hair too hard. A wide-toothed comb or very soft

baby brush may be more comfortable to use, especially if the scalp is tender.

● Try using gentle hair products such as baby shampoo, as these will not cause the hair to become too dry or irritate the scalp.

● Wash your hair using tepid rather than hot water.

● Avoid rubbing the hair dry as this will put unnecessary strain on the strands. Try patting it instead.

‘I discovered that I really suit short hair, so have kept an elfin cut ever since.’ Corrin

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Coping with hair loss LYM0055/HairLoss/2012v3..

If you are having chemotherapy avoid any chemicals such as those used in hair dyes and perms. Residual chemicals may still be present in the hair strands which may react to the treatment you are having for your lymphoma.

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Heat can cause hair to become dry and therefore to break. It is best to avoid using heated rollers, hairdryers, hair straighteners and other hot equipment. Allow your hair to dry naturally.

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● Do not use elastic bands or rollers in your hair at night, which might damage or pull on the hair. Plaiting hair can also cause unnecessary strain and break. If you need to tie hair back it is best to use softer ties such as a scrunchie.

● Try wearing a hairnet or towelling turban at night. This will catch the hairs when they fall out and keep your head warm.

● Rubber gloves can be helpful for removing hair from bedlinen. Some people use sticky tape to remove smaller amounts.

● Losing your eyelashes can make your eyes feel more sensitive. Sunglasses can provide some protection.

● Using make-up can help to boost your confidence. Eyeliner and an eyebrow pencil can be used effectively to disguise lost eyebrows and lashes.

● Avoid using perfumed deodorant as this can irritate the underarm area. Never use deodorant if the skin is sore or still healing from treatment. Shaving may not be necessary but it is best avoided.

● A wig liner can be used under any headwear (not just wigs) for added comfort. They are extremely soft and made from 100% cotton. Wig liners can be bought from Luscious Lids (www.lusciouslids.com) or from other suppliers.

● Tying an attractive scarf around your head can keep you warm on cooler days and protect your scalp from the sun. They can also make a nice change from wearing a wig or a hat. Scarves need to be at least 50 cm long to be able to cover the scalp.

● Turbans are also a popular alternative. They are available in a variety of materials, including cotton, towelling and velvet.

● Some people feel more confident if other people’s attention is drawn away from their hair and head – make-up, earrings, necklaces and brightly coloured shirts, tops and ties are ideas to try.

Caring for your scalp Sometimes your scalp may become sore or irritated. The following tips are for looking after your scalp during and after treatment:

● Wearing a hat can help to protect the scalp from the sun and can retain heat during cold weather.

● A sun-blocking cream is advisable if you are not wearing a hat. This is also the case if your scalp is exposed in cold weather, as the skin will still be susceptible to damage from any sunlight as well as from the wind and cold.

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If your scalp is dry, try a mild, unperfumed moisturiser. If you �nd that your scalp becomes �aky, moisten some cotton wool with natural oils such as almond oil or olive oil and gently massage into the scalp.

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Avoid frequent washing but, when you do, try using a mild baby shampoo. Medicated shampoos can irritate the scalp.

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● Aloe vera lotion, gently massaged onto the scalp, is known to have a soothing effect.

● If you notice spots or your scalp feels moist, let your medical team at the hospital know (you may have an infection).

● Use pillowcases made of 100% cotton. Pillowcases made of man-made fibres can irritate the skin or make you feel hot.

● A chilled pillow might help to alleviate irritation of the scalp. These are available to buy online or by telephone. The Chillow® is quite popular (www.chillow.co.uk or ring 08700 117 174).

When your hair starts to grow back ● The scalp can itch as the hair grows back. Moisturising the scalp and more

frequent shampooing may help to alleviate this.

● It is advisable to wait 6–12 months after completing treatment before colouring, chemically straightening or perming your hair. This is because residual chemotherapy may still be present in the hair strands and this could react with the chemicals used in the colouring, straightening and perming processes. Your hairdresser should be able to advise you about using natural products such as henna or vegetable-based colourants. Wash-in, wash-out types of hair colour are usually fine, but always check these with your hairdresser.

● Don’t have woven-in hair extensions put in for several months after the hair has started to grow again because the new hair will still be weak and prone to break off if put under strain.

Wigs and other headwear

Help with costsPeople are often unsure about the financial side of obtaining a wig but many people are entitled to a free wig on the NHS. Some people may even be entitled to a second wig after 6 months if necessary.

The Department of Health leaflet HC11, Help with health costs and HC12, A quick guide to help with health costs will give you more details. You can also find information about help with the cost of wigs from Macmillan’s booklet Help with the cost of cancer.

Patients who are not entitled to a free NHS wig may still be entitled to a subsidised wig from the hospital. However, they will need to apply for help with the costs on a Department of Health HC1 form. All these Department of Health leaflets can be viewed and downloaded from their website (www.dh.gov.uk), obtained from larger

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post of�ces or from a clinical nurse specialist or social worker at the hospital.

For those eligible, means-tested Macmillan Patient Grants of up to £500 can be obtained to purchase a wig and/or headwear. Please call the Macmillan helpline (contact details on page 9) for further details.

What to expect from your hospitalAll hospitals have different approaches, procedures and contracts in place. Therefore, some of the following may not be applicable to every hospital. Always clarify the �nancial and practical implications with your hospital or medical centre before making a decision or a purchase. Here are just a few pointers on what you might expect of your hospital:

Some hospitals have hair-loss support workers who can demonstrate how to wear different types of headwear, help with make-up, discuss ideas and tips.

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Some hospitals or support groups run hair and beauty programmes (‘Look Good, Feel better’ or ‘Head Start’). Ask your nurse if your hospital is running such a programme and, if not, whether there are hair and beauty programmes at a nearby hospital.

● Some hospitals have contracts with local wig companies, where patients can visit with their prescription forms. It is advisable to check with hospital staff to see if there are any local arrangements in place. Some wig-fitters visit hospitals to see people on the ward when needed.

● It is important to know which wig companies have contracts with the NHS to supply wigs on prescription; otherwise wigs may be charged at full price.

● Some hospitals reimburse patients for their prescription fees from hospital funds. Check with your own hospital if this is possible.

Taking care of your wig

● Wigs can be made from human or synthetic hair or a mixture of both. Wigs are very natural-looking and comfortable nowadays and come in a wide variety of styles. Wigs made of ‘real’ human hair do not necessarily look better than synthetic ones, and they are more expensive.

● It is not necessary to buy special wig products to care for a synthetic wig. A normal shampoo (or even washing-up liquid) will be fine. Human hair wigs will need more careful handling and care. Ask your wig fitter about how best to care for your wig.

‘Wearing a wig is surprisingly comfortable and from my own experience very few people knew it was a wig. It was so like my own hair. I did not feel that everyone was looking.’ Pat

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Because synthetic wigs are made of plastic bres it is important to keep them away from sources of heat and steam, such as candles, hobs, ovens and steam irons. After washing your wig do not dry it near a source of heat – place your wig on an upturned vase or something similar (in order to keep the shape) and allow it to dry naturally.

Other headwear

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You can usually buy hats and scarves from ordinary department stores. Some also sell turbans, but these might be easier to obtain from chemists, hospital shops or specialist wig and headwear suppliers.

● Experiment with trying on hats to see what styles suit you. Styles which are found to be popular are baseball caps, berets, bandanas and woollen hats. Avoid straw hats as these can be irritating to the scalp.

● Not all hats come down low enough to cover where the hairline would normally be, but you can buy fringes to Velcro into hats and scarves.

● Breast Cancer Care has an illustrated section on scarf-tying (‘Great looks with scarves’) in their booklet, Breast cancer and hair loss. Contact details on page 9.

SupportLosing your hair can be a big blow to your self-image. It can also act as a very visual reminder that you are undergoing treatment. These things can make you feel depressed or even angry. Often people feel guilty for having these feelings – believing that they should be feeling grateful for having the treatment – but they are quite normal.

Sometimes it is helpful to share these feelings with a relative or friend. Spending time with people also helps you to build up confidence and makes it easier to adjust to going out. Your chemotherapy nurses or clinical nurse specialist will be knowledgeable about hair loss and will understand what you are going through, so you might feel more comfortable talking to them.

You are welcome to ring the Lymphoma Association helpline (0808 808 5555) to talk things through. The helpline might also be able to put you in contact with someone who has experience of lymphoma, either themselves or as a close relative. You may wish to speak to a ‘buddy’ like this who has experienced hair loss during their treatment.

‘The whole issue of losing one’s hair is traumatic and it’s difficult to know how best to prepare people for it, but knowledge of the issues involved will help in recognising that it is a short-term problem and it does eventually return to ‘normal’. It is a wonderful feeling to at last be able to remove one’s wig. Being able to discuss hair loss with people who have already experienced it is very helpful.’ Jill

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Listed next are details of organisations which supply wigs and headwear, some of which have been suggested by callers to our helpline.

Banbury Hair is a well established wig manufacturer and supplier for the NHS and private sector. They use real and synthetic hair, offer a wig-�tting service and can provide information, advice and details of local stockists. A catalogue is available.

Banbury Postiche Limited Little Bourton House Southam Road Banbury Oxfordshire OX16 1SR

01295 757406 [email protected] www.banburypostiche.co.uk

Raoul is an established manufacturer and supplier for the NHS and private sector. They use real and synthetic hair and offer a wig-�tting service.

Raoul 34 Craven Road London W2 3QA

020 7723 6914 [email protected] www.raoulwigmakers.co.uk

4myhead.com offer a mail-order headwear service aimed at people who have experienced hair loss through illness.

4myhead.com 346a Farnham Road Slough Berkshire SL2 1BT

07505 028 099 www.4myhead.com

Hats 4 Heads offer a mail-order hat service which is targeted at people who are losing their hair through illness.

Hats 4 Heads PO Box 407 Altrincham Cheshire WA15 9WX

0161 941 6748 [email protected] www.hats4heads.co.uk

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Hair In-X-S staff are specially trained in the application of human and fibre hair extensions and aftercare. For people with temporary or permanent patchy hair loss.

Hair In-X-S 41 Grenville Close Burnham Berkshire SL1 8HQ 01753 859777 / 859445 www.hairinxs.com

Wig Bank offer new and donated wigs for sale and hire. People donate wigs they no longer need. The wigs are washed, conditioned and sold for between £10 and £20, or you can hire them for £5. 01350 728030 [email protected] www.wigbank.com

Other websites suggested by callers to our helpline:

www.bandanashop.com

www.girlyshop.co.uk

www.lusciouslids.com

www.suburbanturban.co.uk

www.hothair.co.uk

www.alternativelook.co.uk

www.wigstoreuk.co.uk

www.chemochic.co.uk

www.wigs4u.co.uk

www.beautiful-wigs.co.uk

www.wigsonlinestore.com

Some of our callers have suggested using auction sites to buy products, such as eBay.

ReferencesBarraclough J. Cancer and Emotion. 3rd edition. 1999. John Wiley & Sons, Chichester.

Corner J, Bailey C (eds). Cancer Nursing: care in context. 2nd edition. 2008. Blackwell Publishing, Oxford.

National Institute for Health and Clinical Excellence. Improving Palliative and Supportive Care for Adults with Cancer. March 2004. NICE, London.

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How we can help youWe provide:

● a free helpline providing information and emotional support 0808 808 5555 (9am–6pm Mondays–Thursdays; 9am–5pm Fridays) or [email protected]

● free information sheets and booklets about lymphoma

● a website with forums and a chatroom – www.lymphomas.org.uk

● the opportunity to be put in touch with others affected by lymphoma through our buddy scheme

● a nationwide network of lymphoma support groups.

How you can help usWe continually strive to improve our information resources for people affected by lymphoma and we would be interested in any feedback you might have on this article. Please visit www.lymphomas.org.uk/feedback or email [email protected] if you have any comments. Alternatively please phone our helpline on 0808 808 5555.

We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor.

The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites which we link to. Please see our website (www.lymphomas.org.uk) for more information about how we produce our information.

© Lymphoma Association PO Box 386, Aylesbury, Bucks, HP20 2GA Registered charity no. 1068395

Produced 20.11.2012 Next revision due 2015

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Coping With Hair Loss