Coping with symptoms of lymphoma

This page has general advice and practical tips for coping with some of the common symptoms of lymphoma. We have a separate section on side effects of lymphoma treatment, which you might also find helpful.

We strongly recommend that you speak to your medical team for advice about managing your symptoms.

On this page

Coping with symptoms of lymphoma

Coping with swollen lymph nodes

Coping with fatigue

Coping with weight loss

Coping with night sweats

Coping with itching

Coping with pain

Coping with skin symptoms

Coping with swollen arms or legs

Coping with your emotions

Coping with common symptoms of lymphoma

Coping with symptoms of lymphoma can be emotionally and physically challenging. On this page, you will find suggestions you could try to help manage some of the more common symptoms.

If you are finding it difficult to cope, speak to your medical team. You might also find information on our online forum helpful, or call our Helpline on freephone 0808 808 5555.

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Coping with swollen lymph nodes

 
I was very aware of a big node in my neck so I’d often wear a little scarf. I had another one under my arm and I would always wear something with sleeves because I was so aware of these big lumps and bumps.
Doreen, diagnosed with small lymphocytic lymphoma in 2007

Swollen lymph nodes usually get better after treatment for lymphoma.

If you are on active monitoring (watch and wait), you are self-conscious about your lymph nodes, or you are finding it hard to cope with any change in your appearance, Macmillan has lots of resources that may help you.

It is natural to worry if you notice a new, or bigger, lymph node. Remember that it is normal for lymph nodes to go up and down over time. Lots of things – infections, skin conditions and immune diseases, for example – can cause lymph nodes to swell.

Checking your lymph nodes too frequently can cause unnecessary worry and also makes it more difficult to notice any changes in size of lymph nodes. Try not to check your nodes more than once a month. You might find the British Association of Dermatologists’ leaflet on how to check your lymph nodes helpful.

You know your body and how you normally feel. If you notice any new, or bigger, lumps that last more than a week, contact your medical team.

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Coping with fatigue

Fatigue is a common symptom of lymphoma and many people find it one of the hardest to live with. If you are struggling to cope with fatigue, speak to your medical team. They can check for any underlying conditions that might be making your fatigue worse (such as anaemia, depression or anxiety). They may also be able to refer you for further help.

Visit our fatigue page for advice on things you can do yourself to help you manage fatigue.

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Coping with weight loss

If you have lost weight due to lymphoma and are now underweight, you can boost your energy (calorie) intake in the following ways:

  • Choose full-fat options (for example, whole milk) over low-fat alternatives.
  • Add cheese or sauces to pasta or vegetables.
  • Add sugar, honey or syrup to drinks and puddings.
  • Add butter or oil to bread, pasta, potatoes and vegetables.

You can find more information on our diet and nutrition page.

Contact your doctor if you lose more than 5% of your body weight over 6 to 12 months without trying to. For example, if you normally weigh 10 stone, contact your doctor if you lose more than 7lbs.

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Coping with night sweats

Night sweats can be caused by the lymphoma itself or by some treatments for lymphoma (for example, rituximab, and some chemotherapy drugs). For some women, certain types of chemotherapy may lead to menopause, which can also cause sweating. Some antidepressants can also cause night sweats.

If you are having treatment for your lymphoma, your night sweats often stop once you finish. However, they can sometimes carry on for a while. Here are a few suggestions that might help you cope with night sweats:

  • Keep your bedroom cool – using a fan or keeping your window open might help. If you have a bedroom thermostat, try turning it down lower than usual.
  • Choose natural fabrics such as cotton rather than man-made fabrics for bed sheets and your night clothes.
  • Use light layers of nightclothes. This way you can take them off and put them back on easily.
  • Put a soft towel underneath you in bed (some people put one on top too) to save your bed sheets from getting too wet.
  • Consider a mattress protector or waterproof sheet. There are lots of options available in a variety of soft fabrics.
  • Make your bed in layers if you often have to change your bedding in the night. Some people use a waterproof sheet and a normal sheet with another waterproof sheet and normal sheet on top. If the top layers get soaked through, it is easy to take them off in the middle of the night, leaving clean, dry bedding underneath.
  • Avoid spicy foods and sugary drinks, especially in the evening.
  • Avoid alcohol and caffeinated drinks.
  • Drink plenty of fluids (2 to 3 litres a day, preferably cold drinks) to replace the fluids you lose through sweating.
  • Exercise can help – earlier rather than later in the day. 
  • Complementary therapy and relaxation techniques, such as hypnosis or acupuncture, are helpful for some people. 

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Coping with itching

Itching due to lymphoma usually settles very quickly if you start treatment. However, it can be very troublesome, disrupting sleep and making it difficult to cope in the daytime. If it goes on for a long time, itching can lead to anxiety and depression and significantly reduce your quality of life.

If you are finding it hard to cope with itching, you might find the tips below helpful. If your itching is very intense or is interfering with your sleep or your day-to-day life, talk to your medical team. They may be able to prescribe medicine to help, such as:

  • anti-histamines (for example, cetirizine or loratadine)
  • antidepressants (for example, mirtazapine)
  • medicines used to treat nerve pain (for example, carbamazepine or gabapentin)
  • steroids (for example, prednisolone).

They might refer you for light therapy.

General tips

  • Try not to scratch as you could be left with lasting scars. Instead, try rubbing in some cream, applying cool packs or pressing or tapping your fingers on your skin.
  • Cut your nails very short to help prevent scratching.
  • Moisturise frequently throughout the day with unscented moisturising creams or lotions or an anti-itch moisturiser, which your doctor or nurse can prescribe. Aim to moisturise two to three times a day and after bathing or showering. Try keeping your moisturiser in the fridge; the cooling effect can be soothing.
  • Make time to relax – stress and anxiety can make itching worse and make it harder to cope. You may find relaxation and meditation techniques helpful.
  • Eat a healthy diet and drink plenty of water – this can help to keep your skin hydrated and healthy.
  • Consider using a humidifier to prevent your skin drying out.

Bathing and showering

  • Try not to bathe or shower too often – the water can dry your skin and cause itching, so having short baths or showers may be better.
  • Use lukewarm water – hot water can trigger itching.
  • Avoid bubble baths, perfumed soaps and perfumed shower gels. If your skin isn’t dirty, wash using plain water. If you need something more, try using a moisturising soap substitute (sometimes called an ‘emollient wash product’) or a skin cleanser designed for sensitive skin instead of soap. Your doctor might prescribe a product for you to use. Rinse your skin thoroughly to remove any residue.
  • Try taking an oatmeal bath. This can be very soothing. You can buy oatmeal bath products or make your own by grinding uncooked, unflavoured oats to a very fine powder in a food processor or coffee grinder. Add about a cupful of the oatmeal powder to a lukewarm bath. The water should turn milky with a silky feel. Take care getting in and out of the bath as oatmeal will make it slippy.
  • Avoid scrubbing your skin with a loofah, body puff or any type of body scrub. Try a soft, cotton washcloth instead.
  • Pat your skin dry instead of rubbing it with a towel.
  • Avoid perfume or lanolin-based products including perfumed deodorants and antiperspirants.
  • Avoid using alcohol-based products such as wet wipes and antibacterial hand gel as these products can dry and irritate the skin.

Clothes

  • Wear loose-fitting clothing made of cotton or other soft fabric, which is less itchy than wool or man-made fabrics.
  • Keep your night clothes and bed sheets light and loose (again, cotton is better).
  • Wear cotton gloves at night to stop you scratching during your sleep. 
  • Avoid laundry detergent residue on clothing and bed sheets – small traces of detergent can be left on clothes and make your skin itch. Try using a detergent that is made for washing babies’ clothes as this will be softer on your skin. Give your washing an extra rinse at the end of the wash cycle.

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Coping with pain

Lymphoma isn’t usually painful but sometimes, swollen nodes press on other tissues and cause pain. This should improve if you have treatment.

Pain due to cancer can be managed. If you have pain due to lymphoma, tell your medical team. They can prescribe medicine to help.

Lots of different treatments are available. Your medical team will recommend the best option for you. 

There are also things you can do yourself that might help you cope with your pain.

  • Take any pain medicine you’ve been prescribed according to your doctor’s instructions. It’s important to realise that your body does not become immune to pain medicine. Don’t wait until the pain gets unbearable before taking your medicine. This could make it harder to manage.
  • Try using heat to ease the pain. You could use a hot water bottle, a microwaveable heat pack or a gel pad. Don’t use them for longer than 10 minutes at a time and take care not to burn your skin. Hot baths and showers might also be soothing.
  • Try using an ice pack to numb the pain. You can buy gel packs that go in the freezer or you can make your own from ice cubes or frozen peas. Make sure you wrap them in a towel to protect your skin. Again, limit their use to 10 minutes at a time and be careful not to damage your skin.
  • Relaxation techniques such as meditation, imagery or mindfulness can be very helpful for some people. Consider complementary therapies such as acupuncture, massage, tai chi or yoga.

Do not use heat or ice packs over any area where circulation is poor. Check with your doctor before you use them.

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Coping with skin symptoms

Skin (cutaneous) lymphoma is a rare condition with a variety of symptoms that can be distressing. We have a separate page dedicated to practical advice to help you manage the symptoms of skin lymphoma.

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Coping with swelling in the arms or legs

Lymphoedema (swelling in an arm or leg due to blocked lymphatic vessels) is uncommon in people with lymphoma and usually gets better after treatment. However, it can be very uncomfortable. It can also increase your risk of infection and blood clots.

If you have lymphoedema, your medical team might prescribe a ‘gradient pressure garment’ or ‘lymphoedema stocking or sleeve’. This is a special type of elastic bandage that applies controlled pressure to the affected limb. It is tighter over your feet and hands than it is closer to your body to encourage the flow of lymphatic fluid.

There are also things you can do to help.

Skin care

  • Keep your skin and nails clean and dry to help prevent infection.
  • Moisturise your skin regularly.
  • Use sunscreen to avoid getting sunburn.
  • Cut your toenails straight across rather than in a curved shape to prevent ingrowing toenails and infections.
  • If you need to check the temperature of the bath, use the unaffected arm or leg.
  • Use a thimble if you do any needlework.

Healthcare

  • Make sure any blood tests, blood pressure measurements or injections you need are in the unaffected arm.
  • Be aware of the signs of infection.

Clothing

  • Wear loose-fitting clothes and jewellery and cotton socks.
  • Avoid going outside in bare feet.
  • Wear gloves for gardening and cooking.

Lifestyle

  • Keep the affected arm or leg elevated whenever possible.
  • Try to avoid putting pressure on the affected arm or leg.
  • If your legs are affected, do not sit with your legs crossed.
  • Don’t sit in the same position for more than 30 minutes at a time.
  • Don’t use heat packs on the affected arm or leg. This could increase blood flow and make the swelling worse.
  • Exercise can improve the lymphatic drainage from the affected limb.

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Coping with your emotions

If you are struggling with your feelings, you might find it helpful to visit our page on the emotional impact of lymphoma. We have some suggestions on how to cope with difficult feelings.

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Further reading