How lymphoma can lead to the end of life

This information outlines possible physical changes that can lead to the end of life for someone with lymphoma. We say ‘you’ throughout, to refer to the person with lymphoma – however, we realise that you might be reading this information if someone close to you has lymphoma.

This information might be upsetting to read. Our Information and Support Team are here to support you. We also have a list of useful organisations that offer bereavement services as you process the end of life.

We have separate information about stopping active lymphoma treatment, and more about physical changes towards the end of life. We also address some frequently asked questions about lymphoma and the end of life.

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What happens to your body as you come towards the end of life?  

Lymphoma that affects the liver, lungs and other organs 

What happens to your body as you near the end of life?

Gradually, your body slows down and stops working as it should. You might have less energy, lose weight and spend more time sleeping.

When lymphoma affects a particular organ, it can stop that organ from doing its job. The symptoms you have depend on which organ or organs it affects.

As you near the end of life, you might experience:

• bone marrow failure
• imbalance of chemicals
• lymphoma involvement of other organs.

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Bone marrow failure

Lymphoma can affect the bone marrow, where blood cells are made. This can affect how well you are able to make new blood cells. Bone marrow failure can lead to:

• Infection: this can happen if you have a shortage of white blood cells (neutropenia), which heightens your risk of infection. People with severe bone marrow failure can die from an infection, such as a chest infection.
• Sepsis: if infection gets into the bloodstream (sepsis), it can cause loss of consciousness. Sepsis can lead to two or more of your organs to stop working (multiple organ failure), and death.
• Shortness of breath, weakness and fatigue: this can happen if you have a shortage of red blood cells (anaemia), stopping your organs from getting enough oxygen to work properly.
• Bleeding and bruising: this can happen if you have a shortage of platelets (thrombocytopenia), which increases your risk of bleeding and bruising. Bleeding can happen from inside your body, such as your gut (internal bleeding) as well as from the outside of your body (external bleeding). Internal bleeding can be very serious and lead to death. Thrombocytopenia can also increase your risk of bleeding in the brain. If this affects the blood supply to your brain, it can cause a stroke.

What can doctors do to help?

Doctors might offer blood transfusions to help you stay comfortable, reduce fatigue and help with breathlessness when your bone marrow isn’t working well. This replaces some of the blood cells that your bone marrow can no longer make. However, blood transfusions come with potential risks and work only for a short time.

Transfusions are mostly only given in hospital environments, so thought needs to be given to travel and the practicalities of the transfusion. When you feel the efforts might outweigh the benefits, it is worth speaking to your medical team for advice.

Charlotte Bloodworth, Bloodworth, Lead Clinical Nurse Specialist in Haematology

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Imbalance of chemicals and salts in your body

Lymphoma cells can release abnormally high levels of chemicals and waste products.

Normally, your liver and kidneys can remove waste products to restore this balance. If lymphoma stops these organs from functioning as they should, it can lead to an imbalance of chemicals and salts in your body. 

This can cause problems such as: 

• feeling drowsy
• lowered consciousness, making you confused about time, place and who you and other people are
• slower or no responses to things such as noise, light and people
• your organs not working properly
• high levels of calcium in the blood (hypercalcaemia).

High levels of calcium in the blood (hypercalcemia)

Hypercalcemia is a common problem for people with advanced cancer. It can cause confusion and agitation (restlessness and irritability). In some cases, it can make your heartbeat irregular – this can lower your blood pressure, which might lead to loss of consciousness (fainting).

What can doctors do to help?

Doctors can take steps to help with the imbalance of chemicals and salts in your body. To help with the balance of calcium, you might be given fluids or a bisphosphonate drug into a vein (‘intravenously’ or ‘by IV’) as a drip. This can help with the symptoms of hypercalcaemia. 

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Lymphoma that affects the liver, lungs and other organs

The symptoms you have depend on which parts of your body your lymphoma affects, for example, your liver, lungs or other organs.

Doctors can offer palliative treatment to help lessen these symptoms.

Often, steroids are part of this.

Lymphoma that affects the liver

If lymphoma is in your liver, you might get problems including:

• feeling sick (nausea) or being sick (vomiting)
• feeling less hungry than usual
• lowered levels of consciousness
• lowered interest in things
• confusion
• discomfort and swelling in your tummy (abdomen)
• jaundice, from a build-up of a waste product (bilirubin), which makes your skin and the whites of your eyes turn yellow
• increased risk of bleeding and bruising
• an imbalance of blood sugar levels.

Lymphoma that affects the lungs

If lymphoma affects your lungs, you might have difficulties breathing. Inflammation of the airways can lead to a dry cough. You also have an increased risk of getting a chest infection. 

Lymphoma that affects other organs

Other organs can be affected if enlarged lymph nodes press against them and put pressure on them. This can cause blockages and pain.

For example, pressure on the:

• food pipe (oesophagus) can block the passage of food
• blood vessels can block the passage of blood
• kidneys can block the passage of wee (urine).

What can doctors do to help?

Your medical team can offer symptom control through radiotherapy or steroids. 

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