Coping with symptoms of lymphoma

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Swollen lymph nodes

Although the lymph nodes themselves aren’t usually painful, they can cause pain in surrounding areas if they are swollen and 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 upon starting treatment for lymphoma. Whether or not you are having treatment, you can ask your medical team for advice about managing pain.

Some people feel self-conscious about swollen lymph nodes. If this is the case for you, you could use accessories to help cover them or to take attention away from them. You might also choose to tell some people about any swollen lymph nodes you have 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.

 

I was very aware of a big lymph 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. I also found bras with no wires more comfortable than underwired ones as they didn't dig in to lumps.

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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.

If you are affected by fatigue, speak to your medical team. They can check for and address any underlying factors that might be affecting your energy levels, for example, anaemia or low mood.

Although there is no treatment for cancer-related fatigue, your medical team can help you to manage it. They can offer practical suggestions and might refer you to another healthcare professional, 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 be both directly and indirectly linked to lymphoma. For example, some treatments can cause weight loss. Your appetite might also be lower if you feel high levels of stress or anxiety. Speak to a member of your medical team for advice about how to gain weight safely. Your clinical nurse specialist is often a good first point of contact. You might also be offered a referral to a dietitian to help with ongoing or specific nutritional difficulties.

Make sure you’re getting enough calories (energy). Don’t rely on foods that are high in saturated fat and sugar, such as cakes and biscuits, as this can lead to other health issues.

You can also boost your energy intake in the following ways:

• 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.
• Snack between your regular meals. Choose healthy foods that are high in energy, such as unsalted nuts, dried fruit, full-fat products and starchy carbohydrates. 

Aim for gradual weight gain. The NHS website has guidance about how to gain weight safely. 

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Night sweats

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

If you are having treatment for lymphoma, your night sweats often stop once treatment finishes. However, they can sometimes carry on for a while.

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. Layering your clothes can make it easier to remove a layer if you get hot.
• Avoid spicy foods, sugary drinks and caffeine – in particular, limit these in the few hours before bed time to ease night sweats.
• Drink plenty of cold, non-caffeinated fluids (around 2 to 3 litres a day) to replace those you lose through sweating.
• Exercise earlier rather than later in the day, to help ease night sweats.

When you go to bed…

• Open a window, use a fan or adjust your thermostat to help keep your bedroom cool at night.
• Place a soft towel or mattress protector underneath you in bed to keep your bed sheets from getting wet.
• Layer your bedding so that you can easily take top layers off during the night if they become wet. Some people do this by alternating waterproof sheets with their standard sheets.

You could also try a complementary therapy, such as acupuncture or meditation techniques, to help manage sweats. Speak to a member of your medical team to check that it’s safe for you before you try one.

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Itching (pruritis)

Itching due to lymphoma usually settles very quickly if you start treatment. However, it can be very challenging to cope with and can lower your mood. If you experience 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 lasting 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.

If your itching is intense or disruptive to your sleep or day-to-day life, seek advice from your medical team. They might be able to prescribe a corticosteroid medication to help ease it, for example hydrocortisone or prednisolone. Sometimes, doctors prescribe other medications that are usually used to treat symptoms of other conditions, such as allergies (antihistamine), depression, nerve pain and epilepsy. In some cases, if the itching is ongoing, you might be offered a referral to have light therapy (phototherapy).

Eating 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. It’s also important to make time to relax; stress and anxiety can make itching worse and make it harder to cope.

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.
• Having 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, but avoid applying this directly to your skin as this can cause ice burn. Instead, you could wrap a towel around the cool pack. Limit use to about 10 minutes so as not to damage your skin.
• 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.

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Pain

Lymphoma isn’t usually painful but sometimes, swollen nodes press on other tissues and nerves which can cause pain. This should improve if you have treatment. However, even if you don’t have treatment for lymphoma, your medical team should still offer advice to help cope with pain. This might include prescribing pain relief medication.

There are also 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 also find 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 or cold is suitable for you – you should avoid using heat or cold 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 your thinking processes (such as memory, attention and speed of response), speak to your doctor or nurse about how this affects you. You can ask them for advice 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.

 

Symptoms affected my thinking processes took longer to resolve than they do for some people. I did really easy crosswords and Sudokus to help feel I was achieving something and, in time, I got back to doing harder ones.

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Swelling in the arms or legs (lymphoedema)

Lymphoedema is uncommon and usually gets better once treatment starts. Nonetheless, lymphoedema can be very uncomfortable. It can also increase the risk of developing blood clots and the risk of infection.

Compression bandages, wraps and garments, such as sleeves, stockings, tights or gloves can help to improve the flow of lymph (the fluid that flows around your lymphatic system). This can control pressure and ease the symptoms of lymphoedema. You can watch a video about compression garments on The Lymphoedema Support Network’s website.

Listed below are some of the things you can do to help if you have lymphoedema. These include tips about good 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 to move lymph from areas of swelling into working lymph nodes, where it can be drained.

Skin care

Look after your skin to keep it healthy and to lower the risk of infection.

Lymphoedema increases the risk of a skin infection called cellulitis, which needs treatment with antibiotics. Ask your medical team for advice about any symptoms to be aware of and what to do if you notice them. You might also be interested in The Lymphoedema Support Network’s self-management skin care video, which explains the importance of skin care and ways of preventing cellulitis.

• 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.
• Keep your skin moisturised 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 water and an antiseptic to clean it, and cover them with a dressing.
• Protect yourself from sunburn – cover your skin and use a high factor sunscreen (minimum factor 30) 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, the following might be helpful to avoid:

• Pressure on the affected arm or leg. For example, avoid sitting or standing in the same position for more than about 30 minutes at a time, and don’t sit with your legs crossed.
• Using an affected arm or leg to check temperature of bath or washing up water.
• Having an injection, blood test or blood pressure check using an arm affected by lymphoedema – ask the nurse if they can use another part of your body.
• Wearing tight clothing or jewellery.

Approaches to try

To help ease symptoms of lymphoedema, you could try:

• Elevating the affected limb when you’re sitting down – for example, rest your arm on a pillow or cushion, or keep your legs up on a sofa.
• Gentle 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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