Coping with lymphoma symptoms

Swollen lymph nodes

Swollen lymph nodes themselves aren’t usually painful. However, they might cause pain in the areas around them if they press against nerves and tissues. 

Where you feel pain depends on where in the body the swollen lymph nodes are and which nerves they affect. Swollen lymph nodes usually get smaller once you start lymphoma treatment. Whether or not you are having treatment, you can ask your medical team for advice about managing pain.

Some people feel awkward or embarrassed about swollen lymph nodes. If this is the case for you, you could wear accessories to help cover or take attention away from them. 

You could tell some people about swollen lymph nodes that they might see – for example, close friends or people you work with. Sometimes, being open can help to ease any awkwardness that you might feel.

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Fatigue

Cancer-related fatigue is a type of extreme tiredness that can be physical, mental and emotional. It’s a common symptom of lymphoma, as well as a side effect of some treatments.

Your medical team can check for anything underlying that might be affecting your energy levels, for example, anaemia or low mood. They can then offer advice or treatment.

Although there is no treatment for cancer-related fatigue, staying active and undertaking regular light exercise often helps to avoid severe fatigue. Your medical team can help you to manage it by offering practical suggestions. They might also refer you to another healthcare professional, for example a physiotherapist or occupational therapist, depending on how fatigue affects you.

Our information about cancer-related fatigue has practical tips to help you manage fatigue.

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Weight loss

Weight loss can happen for a number of reasons. For example, some lymphoma treatments can cause weight loss. You might be less hungry if you feel high levels of stress or anxiety. 

Speak to a member of your medical team for advice. They can talk to you about healthy ways to gain weight. Your clinical nurse specialist is often a good first point of contact. If you have ongoing specific difficulties eating, you might also be offered a referral to a dietitian.

The general guidance is to make sure you’re getting enough calories (energy) with healthy foods. 

You could also talk to your medical team about boosting your energy intake. For example:

• Snack between meals. Choose healthy, high-energy foods such as unsalted nuts, dried fruit and starchy carbohydrates. 
• Choose full-fat options over low-fat alternatives.
• Add cheese or sauces to pasta or vegetables.
• Add butter or oil to bread, pasta, potatoes and vegetables.

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Sweats

Sweats are more common at night but can also happen during the day. They can be caused by the lymphoma itself or by some lymphoma treatments. For some women, certain types of chemotherapy might lead to an early menopause, which can also cause sweating. 

Sweats often stop once you finish lymphoma treatment. However, they can sometimes go on for a while longer. 

Prescription medications for other conditions might also cause or worsen sweats – talk to your medical team about any you are taking. 

You could try the following to help cope with sweats during the day and at night:

During the day:

• Wear clothes made from natural fabrics, such as cotton – you could layer your clothes so that you can easily take something off if you get hot.
• Avoid spicy foods, sugary drinks and caffeine – in particular, limit these in the few hours before you go to bed, to ease night sweats.
• Drink plenty (around 2 to 3 litres a day) – choose cold, non-caffeinated and non-alcoholic fluids to replace those lost through sweating.
• Exercise earlier rather than later in the day – this can help to ease night sweats.

When you go to bed:

• Keep your bedroom cool – open a window, use a fan or adjust your thermostat.
• Place a soft towel or mattress protector underneath you in bed – this can help to keep your bed sheets from becoming wet.
• Layer your bedding – this can make it easier to take top layers off during the night if they become wet. Some people alternate waterproof sheets with their regular sheets.

You could also speak to your doctor about the following options to help manage sweats:

• prescription medications 
• trying a complementary therapy, such as acupuncture or meditation techniques
• cognitive behavioural therapy (CBT), which is a type of talking therapy. 

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Itching (pruritis)

Itching usually settles very quickly after starting lymphoma treatment. If you have itching and dryness as a symptom of skin lymphoma, you might be interested in our separate information about living with skin lymphoma.

Although it’s difficult, try not to scratch as it can worsen the itch and leave scars. Cutting your nails very short can help prevent scratching. You could also wear cotton gloves in bed in case you scratch in your sleep.

It’s important to moisten dry skin – an emollient can be helpful. It’s also important to dry moist skin well.

Dr Dan Monnery, Consultant in Palliative Medicine

A healthy diet and drinking plenty of water helps to keep your skin healthy. You could also consider using a humidifier to hydrate your skin.

Itching can lower your mood and can be worsened by stress and anxiety. It’s therefore important to make time to relax and to consider your emotional wellbeing.

To help manage itching, you could try:

• Using an unscented or anti-itch moisturiser a few times a day, including after bathing or showering. Ask your doctor or nurse specialist if they can prescribe one.
• An oatmeal bath. You can buy oatmeal bath products, such as colloidal oatmeal, made from ground oats. You can make your own oatmeal bath by grinding uncooked, unflavoured oats into a fine powder using a food processor or coffee grinder. Add a cupful (around 240g/8oz) of the oatmeal powder to your bath. Alternatively, you can fill a pair of tights or a sock with oats, tie a knot and put it in your bath. Use lukewarm water as hot water can worsen skin irritation. The water should turn milky and feel silky. Be careful getting in and out of the bath as the oatmeal will make it slippery.
• Pressing or tapping the skin instead of scratching it.
• Using a cool pack or bag of frozen vegetables to sooth the itch. Avoid applying this directly to your skin as this can cause ice burn. Instead, you could wrap a towel around the cool pack. Limit your use to about 10 minutes so as not to damage your skin. Note that ice should not be used on damaged skin, where circulation is poor, or any areas of lymphoedema. Take particular care not to burn yourself (with heat or ice) if you have reduced sensation due to nerve damage (peripheral neuropathy).
• Wearing loose-fitting, soft clothes. Cotton and bamboo are less itchy than wool and man-made fabrics.

There are some common skin irritants that can worsen itching, such as chlorine, and lanolin or alcohol-based products. Some soaps, perfumes and cosmetics can also cause skin irritation. Generally, there is less risk from products that are fragrance-free.

Treatments for itching

If your itching stops you from sleeping or affects your day-to-day life, your medical team might offer a prescription to help ease it. Examples include menthol cream or a corticosteroid medication, such as hydrocortisone or prednisolone – you might have this as a cream or a tablet, depending on how widespread your itching is. Sometimes, doctors prescribe other medications usually used to treat symptoms of other conditions – for example allergies (antihistamine), depression, nerve pain and epilepsy. Some anti-sickness (antiemetic) drugs can also help with itch. 

If your itch is in one or more specific areas (rather than spread over your body), you could talk to your medical team about capsaicin cream. Capsaicin is what makes chilli peppers hot. Applying it as a cream can help to ‘hide’ or mask the itch for a while. However, it’s important to ask your medical team about this as it isn’t suitable for everyone or in all areas of the body.

In some cases, if the itching goes on, you might be offered a referral to have light therapy (phototherapy).
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Pain

Lymphoma isn’t usually painful. However, if swollen nodes press on other tissues and nerves, this can cause pain. This type of pain should improve with lymphoma treatment. 

Your medical team can talk to you about the type of pain you’re experiencing and can think about why it’s happening. They can offer advice to help cope with it. This might include prescribing pain relief medication, a steroid (dexamethasone) or anti-inflammatory medication.

There are some things you can do yourself that might help you cope with your pain. For example, you could try relaxation techniques, such as meditation, imagery or mindfulness. Some people find other complementary therapies helpful, for example, acupuncture, massage or yoga.

You could also try using heat or cold to relieve pain:

• Heat – for example a hot bath or shower. You could also try applying a hot water bottle or microwaveable heat or gel pad to the area of pain. Heat can be helpful for muscle pain and stiffness. Take care not to apply heat for longer than about 10 minutes at a time though, to avoid damaging your skin.
• Cold – for example, a gel or ice pack, or a pack of frozen vegetables. Wrap these in a towel to protect yourself from ice burn. Ice can be helpful for inflammation and acute pain (that lasts up to about 6 months). Limit use to about 10 minutes at a time so as not to damage your skin.

Check with your doctor or clinical nurse specialist first whether heat, cold, or neither are suitable for you. Heat or cold shouldn’t be used on damaged skin, where circulation is poor, or any areas of lymphoedema. Take particular care not to burn yourself (with heat or ice) if you have reduced sensation due to nerve damage (peripheral neuropathy).

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Thinking processes (cognition)

If you’re affected by changes to thinking processes (such as memory, attention and speed of response), speak to your doctor or nurse. They can offer tips and support to help you cope.

You might also be interested in our information about cancer-related cognitive impairment (‘chemo brain’), which has tips to help manage symptoms that affect your thinking processes. Further information is also available in our Living with and beyond lymphoma book. 

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Swelling in the arms or legs (lymphoedema)

Swelling in the arms or legs (lymphoedema) is an uncommon symptom. It usually gets better once lymphoma treatment starts. As well as causing discomfort, it can increase the risk of infection, particularly of a skin infection called cellulitis, which needs treatment with antibiotics. Lymphoedema can also increase the risk of developing blood clots. Ask your medical team about any symptoms to be aware of and what to do if you notice them. 

It can be helpful to elevate (lift above your heart) the swollen limbs. This can help with lymph drainage. You could rest your arm on a pillow or cushion, or keep your legs up on a sofa.

Compression bandages, wraps and garments can also help by improving the flow of lymph (fluid that flows around your lymphatic system). Depending on which parts of your body are affected, you could try a compression sleeve, stockings, tights or gloves. These can control pressure and ease symptoms of lymphoedema. 

Listed below are some of the things you can do to help if you have lymphoedema. These include tips about skin care, things to avoid, and approaches you might like to try. 

The NHS website has more information about treatment for lymphoedema, including about manual lymphatic drainage – a technique carried out by a specialist to move lymph from areas of swelling into working lymph nodes, where it can be drained.

You can watch videos for people living with lymphoedema on The Lymphoedema Support Network’s website.

Skin care

Think about ways to protect your skin from infection and to keep it healthy and hydrated.

• Keep your skin clean. Soap substitutes (such as aqueous cream or E45) can be gentler on the skin than soap. Dry your skin thoroughly after washing.
• Avoid high temperatures such as hot baths or showers and applying heat packs to areas where you have lymphoedema, as this can increase blood flow to the area and worsen swelling.
• Moisturise your skin by using an emollient daily – ask your medical team to prescribe or recommend one.
• Prevent cuts and grazes. For example, wear gloves if you’re gardening, take care around animals that could bite or scratch, and always wear shoes outdoors. If you do cut or graze yourself, use clean water and an antiseptic to clean it, and cover it with a dressing.
• Protect yourself from sunburn – cover your skin and use a high factor (50) sunscreen, at least in late spring, all summer and early autumn.
• Lower the risk of ingrowing toenails (which can lead to an infection) by cutting your toenails straight across rather than in a curved shape. 

Macmillan Cancer Support has more information about skin care if you have lymphoedema.

Things to avoid

If you have lymphoedema, avoid the following with the affected arm or leg:

• Pressure – avoid sitting or standing in one position for more than about 30 minutes at a time, and don’t sit with your legs crossed. Tight clothing or jewellery is also best avoided.
• Hot water – such as in a bath or when washing up.
• Having an injection, blood test or blood pressure check – ask the nurse if they can use another part of your body.

Approaches to try

To help ease symptoms of lymphoedema, you could try:

• Gentle stretches and exercise such as walking or cycling – movement helps to move lymph through the lymphatic system. The Lymphoedema Support Network have a self-management video about how physical activity keeps lymph moving and demonstrates simple upper and lower body exercises to do at home. Cancer Research UK also outline arm exercises and leg exercises to try if you’re affected by lymphoedema.
• Deep breathing can also help with the movement of lymph. Cancer Research UK has a video that demonstrates deep breathing for lymphoedema.
• The Lymphoedema Support Network has a YouTube channel where you can learn more about coping with lymphoedema.

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Coughing and breathlessness

Coughing and breathlessness often improves once you start lymphoma treatment.

Hot honey drinks can sooth a cough. If not, over-the-counter linctus can help. There is also a range of prescribable medications available that you can ask your doctor about. However, the important thing is that if you have a new cough – particularly if you’re on treatment, or if you’re coughing up green phlegm – speak to your doctor as soon as possible in case you have developed an infection.

Dr Dan Monnery, Palliative Care Consultant

The NHS website outlines how you can make a drink to help sooth a cough: squeeze half a lemon into a mug of boiled water and add a teaspoon or two of honey. Drink while it is warm.

If you experience breathlessness, it can be helpful to have air movement in your face. For example, you could use a handheld fan or sit by a fan. This sends signals to the brain to say that you have plenty of air, which can reduce breathlessness. If you experience breathlessness due to anxiety or panic, ask your medical team if they can support you to manage this too. Ask them for advice.

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