Managing symptoms of skin lymphoma

Skin (cutaneous) lymphoma is a rare condition with a variety of symptoms that can be distressing. This page gives you some practical advice about what you can do to help manage them.

On this page

Alleviating dryness and itching

Controlling your temperature

Managing pain

Improving the appearance of your skin

Dealing with feelings about how your skin looks

Helping yourself 

Getting support

If you have been diagnosed with skin lymphoma, you might also find our pages on T-cell skin lymphoma and B-cell skin lymphoma useful in learning more about your condition. 

Alleviating dryness and itching

The patches and plaques of skin lymphomas can be dry and itchy. Erythroderma (where your skin is reddened and inflamed all over) can be intensely itchy. Itching all the time can make you irritable and miserable. You may find it hard to sleep and become very tired.

Your lymphoma treatment can help alleviate itchiness. Steroid creams are especially good at reducing itching. Creams containing 1% menthol may also help. If itching is very bad, your doctor might give you antihistamine tablets.

To help with dryness, your doctor may give you unperfumed moisturisers to help. These creams and lotions are called ‘emollients’. Some emollients you can add to bathwater.

When bathing, the following tips might help:

  • Take short, lukewarm baths or showers instead of long, hot ones. Long baths or showers dry the skin and hot water can make itching worse.
  • Only use mild, unperfumed soaps or soapless cleansers. Soap can irritate your skin. 
  • Add emollients to your bathwater.
  • Pat the skin dry instead of rubbing it. Do not use talcum powder.
  • Apply emollient moisturising creams and lotions regularly, especially after bathing. Put them on straight after patting the skin dry with a clean towel, while it is still slightly damp. The cream will lock moisture in.

You might have to try a few emollients before finding the one that suits you best. If a particular cream doesn’t help, or makes your skin more irritated, ask for something else.

There are several things you can do to minimise irritation to your skin:

  • Use 100% cotton sheets and pillowcases rather than bedlinen made from man-made fibres.
  • Use mild washing powder suitable for sensitive skin. Give your washing an extra rinse to remove any remaining traces of powder.
  • Wear loose-fitting (perhaps a size larger than usual) and lightweight clothes made from soft cotton, silk or bamboo. Wool and some man-made fabrics can irritate your skin.
  • Avoid clothes and nightwear with many seams, exposed elastic, lace, buttons or embroidery that might irritate your skin.
  • Look after your feet. Well-fitting shoes, insoles and soft, lined socks can help to prevent blisters.
  • If your glasses irritate an affected area, choosing a lighter frame, with a good fit can help. Make sure your glasses do not grip too tightly.
  • If itching is severe, try putting a cold compress on the affected area.
  • Try to keep your environment cool and humid.
  • Avoid going out into the sun for long periods. Wear a high-factor sun cream when you are outdoors. Remember to also protect your scalp if you are not wearing a hat.
  • Keep your nails short to reduce damage from scratching.

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Controlling your temperature

If you have large areas of redness and swelling or erythroderma, the widespread inflammation can make it difficult to control your body temperature. Some people develop fevers, chills and shakes, even hypothermia. Some treatments can prevent you from sweating in some areas, so you can’t lose heat effectively in hot weather.

If the problem is mild, you can manage it by using lighter bed-clothes and wearing loose clothes made of natural fibres, such as cotton. Avoid hot environments. You could ask family and friends you are planning to visit to turn down their central heating when you come over.

In cold weather, try to cover as much skin as possible to avoid losing heat.

If erythroderma is severe, you may have difficulties with fluid balance. You can become dehydrated. This can cause problems with your organs, including putting a strain on your heart. If these problems become severe, or if you get an infection, you need to be treated in hospital. In hospital, you can be treated in a stable temperature environment, with frequent applications of emollients to moisturise your skin and prevent fluid loss.

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Managing pain

Your skin can become painful when it is inflamed. It can also feel tight. It may be particularly painful in areas with tumours, especially if they weep or become infected. Dressing changes can also be painful.

The best way of reducing this kind of pain is to have a good skincare regime. Include regular cool baths and topical emollients to keep the skin supple and to treat dryness. Your doctor may give you emollients that contain antiseptics or urea. A short course of strong steroid cream can also be helpful.

It is important to treat skin infections as early as possible. Look out for signs of infection – the area may become redder, hotter, more swollen or painful. It may produce a yellowish or greenish discharge that may have an unpleasant smell. If you get a skin infection, you will need antibiotics.

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Improving the appearance of your skin

Although early-stage mycosis fungoides usually affects mainly the torso, some skin lymphomas affect the face. You may have discoloured patches or plaques or areas that have lost colour (hypopigmentation). Your skin’s appearance should improve with lymphoma treatment.

If the lymphoma is affecting your face, but is not extensive or very marked, high street make-up might be enough to cover affected areas. Always use products that are hypoallergenic and fragrance-free. Ask your medical team before you use any products to make sure they are safe for you.

If you have skin changes that are difficult to cover up, particularly on your face or hands, you might want to wear camouflage cream. The organisation Changing Faces provides a free camouflage cream service. Your hospital doctor or GP can refer you. Camouflage creams can be prescribed by your GP as well. Ask your doctor or nurse if camouflage make-up is safe for you to use.

Camouflage creams and powders are carefully matched to your skin colour and stay in place much longer than ordinary foundations, even if you play sports or swim. Some people wear them all the time and others just wear them to work or on social occasions. Don’t use them if your skin is particularly dry, inflamed or broken.

Some people with skin lymphoma have hair loss from the disease or treatment. It can be permanent. This can be distressing and can impact your self-esteem. If you experience hair loss, you might find it helpful to read our page on coping with hair loss caused by treatment.

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Dealing with feelings about how your skin looks

When your skin changes in some way, it can impact your self-confidence. You might feel embarrassed about how your skin looks to other people.

If you feel anxious or low about your skin, or about waiting for a diagnosis, speak to your GP or a member of staff at a skin clinic. They can recommend someone you can talk to. It is natural to find uncertainty difficult to cope with and it can help to talk to someone who understands your anxieties. The clinical nurse specialist at your skin clinic might be a good person to approach.

Changing Faces produces booklets on coping with changes in your appearance.

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Helping yourself

Apart from managing your skin symptoms, looking after yourself in other ways can make you feel good.

Keeping active and having a nutritious and balanced diet can help you cope with your skin condition. However, be suspicious of specialised diets that claim to cure a skin condition or skin cancer. There is no scientific evidence to suggest that any particular diet cures lymphoma.

Complementary therapies are what many people try to relieve symptoms of skin lymphoma or associated stress. Be suspicious of any complementary therapy that claims to cure your condition. Relaxation therapy and massage can help with anxiety. No complementary therapy can treat lymphoma.

Some complementary therapies are not suitable if you have a skin condition. For example, herbal creams or massage oils can irritate dry, broken or inflamed skin. If you see a complementary therapy practitioner, tell them that you have a skin condition and that it might be a skin lymphoma.

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Getting support

You may feel anxious about having a skin condition and not knowing what is happening and why. It can be especially difficult if you don’t have a firm diagnosis or don’t need immediate treatment. Keep asking questions. Your consultant and clinical nurse specialist are happy to explain why you are having certain tests or why they don’t feel you currently need treatment.

If you hear or read anything about skin lymphoma that puzzles or worries you, ask about it at the clinic. Take a printout if you can, so that your team can explain what it means and whether it is relevant to you.

Talking to other people with lymphoma or a chronic skin condition

Many people find encouragement and support in other people affected by similar skin conditions. Even if their experiences are not identical to yours, it can be a relief to speak to people who have been through something similar.

Skinship UK is a confidential general dermatology helpline set up and run by Ashley Medicks, who has lived with mycosis fungoides for over 40 years. Get in touch with them if you would like to talk to someone about your skin condition.

If you would like more information or would like to talk to someone about your lymphoma, call our Freephone helpline on 0808 808 5555. We also have an online forum and run a buddy scheme, which might be able to put you in touch with someone who has personal experience with skin lymphoma.

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Further reading

Related content

Get involved

Find out how you can help us make sure no-one has to face their lymphoma alone.

Further information and support

If you would like further information or would like to talk about any aspect of your lymphoma, please contact us. You can speak to our helpline, visit our forums, join a support group or sign up to be matched with a Buddy (someone with personal experience of skin lymphoma).

Skinship UK

Contact Skinship UK, the UK's leading general dermatology Helpline.