Living with skin lymphoma

This page offers advice and support to help you manage symptoms and to live well with skin (cutaneous) lymphoma. Depending on your diagnosis, you might also find our information about T-cell skin lymphoma and B-cell skin lymphoma useful.

On this page

Alleviating itching and dryness

Minimising skin irritation

Treating an infection

Controlling your temperature

Managing pain

Improving the appearance of your skin

Day-to-day life

Skin lymphoma can be difficult to live with. It can take months or years to diagnose, symptoms can come and go, and you may need more than one course of treatment. It can be a chronic (long-term) condition so you might live with it for many years. It’s important to find ways to live well, both physically and emotionally.

If you have a slow-growing skin lymphoma you might not have treatment straightaway; you might be monitored instead. Doctors call this ‘active monitoring’ or ‘watch and wait’. It can be hard to have a diagnosis without being offered immediate treatment. Keep in mind that early-stage (localised) lymphoma is slow to develop and is not life-threatening. It can be better to reserve treatment until it is really needed than to have it right away.


Alleviating itching and dryness

Skin lymphoma can cause patches and plaques (thickened areas of skin), which can be dry and itchy. It can also cause the skin all over your body to become red and inflamed (erythroderma), which can be very itchy. 

Skin irritation can affect your mood and you might find it difficult to sleep. There are things you can try to get a more restful night’s sleep and to help you to relax.

Your lymphoma treatment may help to alleviate itching. Steroid creams are often good at reducing itching. Creams containing 1% menthol may help, too. You could also try putting a cold compress on the affected areas. If the itching is very bad, your doctor might prescribe antihistamine tablets, although these may not be helpful in all types of lymphoma.

There are other types of medication available on prescription if you have erythroderma and severe itching. Speak to your medical team about this.

Take lukewarm baths or showers instead of long, hot ones, as these can make the itching worse. Use gentle, unperfumed soaps or shower gels and pat your skin dry with a soft towel instead of rubbing.

It’s best not to scratch the itch, although this can be very difficult. Cut your nails short to reduce the risk of infection to your skin if you do scratch.

To help with dry skin, your doctor may give you emollients (unperfumed moisturisers). You can add these to bathwater and use them instead of soap. Use emollients regularly. Putting them on straight after bathing and while your skin is still a little damp helps to lock in the moisture. You may need to try a few different emollients before you find one that suits you. 

Speak to your doctor for advice on how best to alleviate your symptoms. 

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Minimising skin irritation

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

  • Use natural materials instead of man-made ones, for example 100% cotton bedlinen rather than polyester. Choose clothes that are made from cotton, silk or bamboo rather than wool.
  • Wash your clothes in mild washing powder. Choose one labelled for sensitive skin. Give your laundry an extra rinse to remove traces of powder.
  • Avoid clothes with features that could irritate your skin, such a lots of seams, exposed elastic, lace, buttons and embroidery.
  • Wear well-fitting shoes. Insoles and soft, lined socks can help to prevent blisters.
  • If you wear glasses, make sure they fit well – not too tightly or loosely. You might also find it helpful to choose a light frame.
  • Keep the temperature around you cool and humid. Avoid going out in the sun for long periods of time. Wear a high-factor sun cream and a hat outdoors during hot weather. 

You may also find our page on dry, sore and itchy skin useful.

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Treating an infection

Look out for signs of an infection, including your skin becoming redder, hotter, more swollen or painful. You might also get a discharge that is yellow or green in colour and smells unpleasant.

If you notice any signs of infection, seek medical attention quickly so that you can be given antibiotics. It’s important to treat the infection as soon as possible.

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Controlling your temperature

Large areas of inflammation (swelling) can make it difficult to control your body temperature. Some people develop fevers, chills and shakes. In some cases, hypothermia (a drop in body temperature to below 35°C/95°F) can develop. Some treatments can prevent you from sweating in some areas of your body, which means that you’re unable to cool yourself down so effectively if you’re hot.

If the problem is mild, there are things you can do to manage your body temperature. Stay cool by wearing lightweight, loose-fitting clothes made from natural fibres, such as cotton. Avoid high temperatures. If you’re visiting friends or family, you could ask them to turn down their heating before you arrive. In cold weather, cover your skin as much as possible to avoid losing heat.

If you are planning a trip abroad, discuss your travel plans with a member of your medical team – ask for advice about any precautions you should take.

Severe erythroderma can affect fluid balance in your body. This may lead to dehydration (lack of fluid), which can cause health problems and put a strain on your heart. Drinking plenty of fluids to replace lost water from the skin can help. Regular use of emollients also helps to keep the skin moist and prevents water loss. If the problem becomes very severe, however, you may need to go into hospital. Staff can keep you in a stable environment and frequently apply emollients to your skin to prevent fluid loss. 

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Managing pain

Inflammation of the skin can be painful. The pain can be particularly troublesome in areas with tumours, especially if they weep or become infected. 

Manage your pain with a good skincare routine:

  • Take regular, cool baths.
  • Use emollients to keep your skin supple and moist.
  • Use any medication given to you as prescribed. Your doctor might give you emollient that contains antiseptics or urea. A short course of strong steroid cream can also be helpful.

Paracetamol and ibuprofen should be safe for you to take; however, seek medical advice before taking any stronger pain relief medication as some can interact with other medications.

You can read more about managing pain on the NHS website. 

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Coping with changes in the appearance of your skin

Your feelings

Changes in the appearance of your skin can affect your mood and self-confidence. You might feel embarrassed about what others think, for example that your skin’s appearance reflects lifestyle factors, such as cleanliness or diet. You might worry that people think you are contagious. 

Take time to reflect on your thoughts and feelings. If you feel low or anxious about your skin, speak to your GP or a member of staff at your hospital clinic – your clinical nurse specialist can be a good person to approach. Some people find it helps to speak to a trained professional about how they feel, for example, a counsellor

Skinship UK is a confidential general dermatology helpline for anyone living with a skin condition, including skin cancer. They offer information, advice and emotional support.

Try to help people understand a bit about your skin’s appearance. Consider explaining to them about your lymphoma and allow them to ask questions. You may feel uncomfortable with people you meet for the first time or don’t know well. Try to have something ready to say – a light conversation starter or perhaps something about your skin. Talking can help to reduce awkwardness – people often say they feel relieved to have something ‘out in the open’. 

Our information on relationships, family and friends offers more suggestions that you might find helpful when speaking to others. 

Improving the appearance of your skin

If the lymphoma affects your face but is not very extensive or marked, regular make-up may help to cover it. Choose hypoallergenic and fragrance-free products. Check with your medical team that products are safe to use before you apply them.

If the affected areas of your skin are difficult to cover, you could try a camouflage cream. Camouflage creams are carefully matched to your skin colour. They are designed to stay in place much longer than ordinary foundations, even if you sweat or swim. Check with your GP before using a camouflage cream as they may be unsuitable for you if your skin is particularly dry, inflamed or broken. If your GP advises that a camouflage cream is suitable, you could ask whether they are able to prescribe one for you.

Changing Faces is a charity that supports people who have a scar, mark or condition that affects their appearance. It provides a free skin camouflage service. The charity also produces self-help guides that help people manage living with an unusual appearance.

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Day-to-day life

Lymphoma can have an impact on many areas of your life. There are lots of things you can try in order to maintain physical and mental wellbeing.

Diet and nutrition

A healthy diet and good nutrition can help you to cope with your treatment and support your recovery. 

Exercise

Regular, light exercise can help to reduce fatigue. It can also help you sleep well and improve your mood. 

Talk to your doctor about any precautions you should take when exercising. For example, you might be advised to have a fresh-water shower after swimming in chlorinated water to prevent skin irritation. Protect yourself from the sun if you exercise outside, especially if you are having phototherapy

Sleep

It can be difficult to rest and to get enough sleep if you are feeling anxious or if your skin is itchy. There are things you can do to help develop a regular sleep routine

Some treatments (such as steroid tablets) can make it harder to sleep. Speak to your medical team for advice to help reduce the impact of steroids on your sleep.

Relaxation

Make time for the things you enjoy – read a book, spend time with friends, or participate in a hobby, for example.

You might be interested in complementary therapies, which can be used alongside your treatment to help improve your quality of life. There are many different types of complementary therapy. Although none can cure your lymphoma, many people find that they help with relaxation, mood and their general sense of wellbeing.

Take care with herbal creams or massage oils, which can irritate dry, broken or inflamed skin. Herbal remedies can cause allergic reactions. Some can also increase your skin’s sensitivity to sunlight or treatment with PUVA (light treatment).

Cancer Research UK lists herbal remedies and their potential side effects.

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With thanks to Kyowa Kirin for contributing towards the costs of maintaining our skin lymphomas webpages. In accordance with how we work with healthcare and pharmaceutical companies, Kyowa Kirin has had no involvement in the content.

Further reading

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Skinship UK

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

Ashley with his wife Jackie

Ashley's story

Ashley runs Skinship UK and has been living with skin lymphoma for more than 40 years.