Coping with hair loss

Produced 2010 Next revision due 2012 Coping with hair loss Introduction Many people experience hair loss (sometimes referred to as alopecia), as a side effect of treatment. Many men and women find this to be the most distressing and visually noticeable side effect of treatment. Men might also have the added distress of losing their facial hair. Hair is a large part of a person s self-image and identity and hair loss can affect self-esteem and confidence. Being informed, supported and practically prepared may help to make it easier to cope at this emotional time. Hair loss due to chemotherapy Why does chemotherapy cause hair loss? Chemotherapy drugs kill lymphoma cells, but they also affect healthy cells, in particular those cells that divide rapidly. Hair loss occurs because chemotherapy damages the cells of the hair follicles in the skin, and the follicles are unable to make new hair cells. Hair loss following chemotherapy is usually only temporary and when treatment has finished the hair starts to grow back. Does everyone lose their hair? No. Although many chemotherapy drugs used in the treatment of lymphoma cause hair loss, not everyone will lose their hair. Your doctor or nurse should inform you of any possible hair loss before your treatment starts. 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. Some men may lose hair from their beards and moustaches. When will it start to fall out? Hair usually starts to fall out a couple of weeks after treatment has started but can sometimes start within the first few days. Some people find 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 may become tender. 1

How long will it take to grow back? Hair may begin to grow back very fine but will probably grow back to a full head of hair after 3-6 months. Hair growth is very individual and some may find it takes longer to grow back. Sometimes hair can be a different texture, possibly curlier or even a different colour. This could be a good opportunity to experiment with different hair styles. 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 a cell. This stops the cell from dividing and kills it. Will I lose all my hair? No. Radiotherapy is a treatment which is delivered to a precise area of the body. When you receive radiotherapy, hair will be lost from the area which is being treated. 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. 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. A few people may experience permanent loss of hair to the treated area. This will depend on the dose of radiotherapy and should be explained to you before your treatment starts. Care of your hair and scalp following radiotherapy treatment 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 radiographer, nurse or doctor about the use of soaps, shampoos and body lotions. 2

Listed below are a few tips which might be helpful before treatment starts Long hair can be cut shorter prior to treatment. This will reduce the weight of the hair pulling on the scalp and possibly minimise the hair loss. It might also make it easier to cope with when the hair starts to fall out. Men can shave their beards/moustaches before treatment starts to allow time to adjust to a different look. It can also give back a sense of control over what is happening to them. Experiment with trying on hats to see what styles suit you. Styles which are found to be popular are baseball caps, berets and bandanas. Avoid straw and woollen hats as these can be irritating to the scalp. Ordering a wig as soon as possible, will allow a close match to your natural hair colour. Wigs come in many different styles and colours. Some take this opportunity to explore different looks. Once treatment starts Try not to brush or comb 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 water rather than hot. Avoid rubbing hair dry as this will put unnecessary strain on the strands. Try patting it instead. If you are receiving chemotherapy it is advisable to 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. Heat can cause the hair to become dry and therefore to break, so it s best to avoid the use of heated rollers, hair dryers and hair straighteners. Avoid the use of elastic bands and rollers at night, which might damage hair. Plaiting hair can also cause unnecessary strain and break. Try wearing a hair net or towelling turban at night. This will catch the hairs when they fall out and keep your head warm. 3

Rubber gloves can be helpful in removing hair from bed linen. The loss of eyelashes can cause eyes to become more sensitive. Sunglasses can give some protection. Using make-up can help to boost 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. Never use deodorant if the skin is sore or still healing from treatment. A wig liner can be used under any headwear including wigs for added comfort. They are extremely soft and made from 100% cotton. 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 hat (scarves need to be at least 50cms 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. Earrings, necklaces and make-up can draw the eyes away from hair. Caring for your scalp 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 re 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 the wind and cold. If your scalp is dry, try a mild unperfumed moisturiser. If you find that your scalp becomes flaky, moisten some cotton wool with natural oils such as almond oil, or olive oil and gently massage into the scalp. Try using a mild baby shampoo, as a medicated shampoo might aggravate the scalp. Avoid frequent washing. Aloe vera lotion, gentle 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). 4

Use pillowcases made of 100% cotton. Pillowcases made of man-made fibres can irritate the skin. A few tips which you might find helpful when your hair starts to grow back The scalp may itch as hair grows back. Moisturising the scalp and more frequent shampooing may help to alleviate this. When hair is 1-2 inches long, hair can usually be styled. It is advisable to wait 1 year following treatment before colouring or perming your hair (residual chemicals may still be present in your strands of hair, which may react with chemicals used in the colouring or perming process). Your hairdresser should be able to advise you on using natural products such as henna or vegetable-based colourants. Obtaining a wig/hat Financial help Many people are unsure about the financial side of obtaining a wig. You may be entitled to help with the costs of obtaining a wig information is available on the Department of Health website http://www.nhs.uk/nhsengland/healthcosts/pages/ Wigsandfabricsupports.aspx The social worker or specialist nurse should be able to make sure that patients are receiving all the help that they are entitled to. It s important to appreciate that hospitals have different approaches, procedures and contracts in place. Therefore, some of the following may not be applicable to every hospital. Always clarify the financial and practical support status of individual hospitals before making a decision. Points to remember You can usually buy hats and scarves from department stores. When buying hats it s good to remember that whilst any hat will cover the head not all hats come down low enough to cover where the hair line would normally be. It s possible to buy fringes to velcro into hats and scarves, to give the impression of hair growth. Some hospitals have hair loss support workers who can demonstrate how to wear different types of headwear, discuss ideas and tips. 5

Some hospitals or support groups run hair and beauty programmes (Look Good, Feel better or Headstart). Ask the nurses if anyone in the hospital is running such programmes and if not, whether there are hair and beauty programmes at a nearby hospital. Some hospitals have contracts with local companies, where patients can visit with their prescription forms. It s advisable to check with hospital staff to see if there are any local arrangements in place as some wig fitters can visit hospitals when needed. It s 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 can reimburse patients for their prescription fees from hospital funds. Check with your own hospital if this is possible. Wigs can be made from human or synthetic hair or a mixture of both. Breast Cancer Care has a scarf tying fact sheet within their hair loss information which can be useful. For a copy, phone 0808 800 6000. Support Losing your hair can be a blow to your self image. It can also act as a reminder that you are undergoing treatment. Both can make you feel depressed and angry. Often people feel guilty for having these feelings. Sometimes it s helpful to share these emotions with a relative or friend. Spending time with people helps to build up confidence and makes it easier to adjust to going out. Doctors, chemotherapy sisters and nurses can give advice on coping with hair loss. You are welcome to ring the Lymphoma Association helpline (freephone 0808 808 5555) to talk things through. The helpline can also put you in contact with a buddy. A buddy is someone who has experience of lymphoma, either themselves or as a close relative. They volunteer their services in the hope that their experience will be supportive and encouraging for someone else. You may wish to speak to a buddy who has experienced hair loss during treatment. Useful organisations 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 fitting service, provide information, advice and details of local stockists. Catalogue available. 6

Banbury Postiche Limited Little Bourton House Southam Road Banbury Oxon, OX16 1SR 01295 757406 sales@banburypostiche.co.uk www.banburypostiche.co.uk BlackCare UK is an internet based company selling Afro Carribbean wigs and beauty products. Black Care UK PO Box 2169 Woodford Green Essex, IG8 0NE 020 8279 0335/0337 info@blackcareuk.com www.blackcareuk.com empower provide a non surgical hair replacement system. The wig can be worn when swimming and with confidence that it won t come off even in windy conditions. Prices start from 895. 0800 915 4121 or 0207 357 6851 www.empower.com Hair InXS staff are specially trained in the application of human and fibre hair extensions and aftercare. For those with temporary or permanent patchy hair loss. Hair InXS 12a Goswell Hill The Arches Windsor Berks SL4 1RH 01753 859777 / 859445 info@hairinxs.com www.hairinxs.com Hats 4 Heads offer a mail order hat service. Hats 4 Heads PO Box 407 Altrincham Cheshire WA15 9WX 0161 941 6748 info@hats4heads.co.uk www.hats4heads.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 fitting service. Raoul 34 Craven Road London W2 3QA 020 7723 6914 email via website www.raoulwigs.co.uk 7

Selfridges offer a personal wig fitting service with private cubicle. customerservices@selfridges.com www.selfridges.com.uk 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 or 20. Or you can hire them for 5. 4myhead.com are an online stockist of hats and headscarves 346a Farnham Road Slough Berks SL2 1BT 07505 028099 info@4myhead.com www.4myhead.com 0131 3365100 info@wigbank.com www.wigbank.com Other websites suggested by callers to our helpline; www.bandanashop.co.uk www.girlyshop.co.uk www.lusciouslids.com www.suburbanturban.co.uk www.hothair.co.uk www.alternativelook.co.uk Acknowledgements We are grateful to Jane Collins, Lymphoma Association Clinical Nurse Specialist at the Christie hospital, Manchester, for reviewing this information sheet. About our publications: The Lymphoma Association is committed to the provision of high quality information for people with lymphoma, their families and friends. We produce our information in accordance with nationally recognised guidelines. These include the DISCERN tool for information about treatments, the NHS Toolkit for producing patient information, and the Campaign for Plain English guidelines. Our publications are written by experienced medical writers, in close collaboration with medical advisors with expertise in the appropriate field. Textbooks and professional journals are consulted to ensure that information is as up to date as possible. References are provided where they have been used. Some publications are written by professionals themselves, acting on guidance provided by the Lymphoma Association. Our publications are reviewed every two years and updated as necessary. Our publications are reviewed by a panel of volunteers with experience of lymphoma. Publications are also reviewed by members of the Lymphoma Association helpline team, who have many years collective experience of supporting those with lymphoma. In some instances, our publications are funded by educational grants from pharmaceutical companies. These sponsors do not have any involvement in the content of a publication. They are not invited to see the content and have no editorial input. Lymphoma Association Views expressed in this publication are those of the contributors. The Lymphoma Association does not necessarily agree with or endorse the comments included here. 8