Understanding lymphoma and HIV

Lymphoma is a cancer of the lymphatic system. The lymphatic system is part of the body's immune system.

There are two main sub-types of lymphoma:

HIV is a virus that attacks the immune system. Your immune system helps protect you from infection and disease. If your immune system is damaged by HIV, you are more likely to catch infections and to develop illnesses such as lymphoma.

People with HIV do not always develop lymphoma. But if you have HIV, you have a higher risk of some types of lymphoma. This includes Hodgkin lymphoma and some types of NHL.

The main types of NHL that affect people with HIV are:

These types of lymphoma also affect people without HIV.

Diagnosing lymphoma and HIV

If you are having tests to diagnose lymphoma, your doctor will ask you if they can take a blood sample to check for HIV too. Knowing whether you have HIV will help your doctors plan safer and more effective treatment for you.

This might mean you find out that you have HIV and lymphoma at the same time. This can be a lot to take in. You will be given information about both conditions and how they are treated.

You may be asked to make decisions about having treatments. You will meet some doctors and nurses who specialise in lymphoma, and others who specialise in HIV.

Treating lymphoma and HIV

Your lymphoma doctors and HIV doctors will work together to plan your treatment. This may mean you have to travel to a hospital that treats both HIV and lymphoma.

Your lymphoma doctor will explain your treatment plan and you will make a decision together about treatment. They can also talk to you about possible ways to preserve your fertility.

Different types of lymphoma are treated in slightly different ways, but the main treatment is usually chemotherapy with steroids. For some types of lymphoma, you will also have a type of targeted therapy drug. Some people will have radiotherapy to treat an area of lymphoma.

If there are no signs of lymphoma after treatment, this is called remission. If lymphoma comes back, this is called recurrence or relapse.

People with HIV usually have the same lymphoma treatment as people who do not have HIV. But there can be a higher risk of some side effects. To reduce this risk and make lymphoma treatment as effective as possible, you will have treatment

  • to control the HIV
  • to prevent infections.

Anti-retroviral drugs

There is no cure for HIV, but anti-retroviral drugs help keep HIV under control. You take these drugs as tablets every day for the rest of your life. They may also be called combination therapy or HAART.

If you are not taking anti-retroviral drugs already, your doctor will talk to you about starting them. If the HIV is treated with these drugs, lymphoma treatment is more effective and you are less likely to have side effects.

Sometimes your HIV doctor will change your anti-retroviral drugs. This is because some of them can react with cancer treatments.

Treatment to prevent infections

Some lymphoma treatments affect the immune system and increase your risk of infections. You may have treatment to prevent infections, such as:

  • antibiotics
  • anti-viral medicines
  • anti-fungal medicines.
  • Treatment to prevent infections is called prophylaxis.

You may also have a drug called G-CSF. You have it as a small injection under the skin. GCSF encourages your body to make more white blood cells. This helps increase the number of infection-fighting cells in your blood.

Chemotherapy

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. 

Most people have chemotherapy for lymphoma as an outpatient. Usually, you have a combination of chemotherapy drugs. The drugs are usually given as liquids into a vein (intravenously), or as tablets. Some people also have a targeted therapy drug along with chemotherapy.

With some types of lymphoma, there is a higher risk the lymphoma will spread to the brain. You may be given chemotherapy into the spinal fluid to reduce this risk. This is called intrathecal chemotherapy. This can also be used to treat lymphoma that is already affecting the brain.

Chemotherapy may affect how well your immune system is working for a while. This is a common side effect. It happens because the chemotherapy reduces the number of infection-fighting white blood cells in your blood.

Temporarily having a low number of white blood cells should not affect how well the HIV is controlled. But it can increase your risk of getting other infections. You will have regular blood tests and check-ups throughout your chemotherapy. You will be given contact details for your hospital before you start treatment. 

If you have any signs of infection during chemotherapy, it is very important to contact the hospital for advice immediately.

Sometimes, your doctor will reduce your dose of chemotherapy or change the drugs you are given. This is usually only if there is a risk of serious side effects.

Steroids

Steroids are drugs that are often given with chemotherapy to treat lymphoma. They help make chemotherapy more effective. They also help you feel better and can make you feel less sick.

Targeted therapy

Targeted therapies recognise and target specific proteins on the lymphoma cells. They also encourage the body’s immune system to attack and destroy the lymphoma cells.

The main type of targeted therapy used to treat lymphoma is a drug called rituximab.

You may have rituximab with chemotherapy and steroids. Sometimes it is given alone as the main treatment for lymphoma.

You may be more likely to get infections while you are having rituximab. You will have regular blood tests and check-ups throughout your treatment.

If you have any signs of infection during treatment, it is very important to contact the hospital for advice immediately.

Radiotherapy

Radiotherapy uses high-energy rays to destroy cancer cells while doing as little harm as possible to normal cells. It only treats the area of the body that the radiotherapy is aimed at.

Radiotherapy is sometimes used to treat groups of lymph nodes that are affected by lymphoma.

Stem cell treatment transplants

Stem cell transplants are sometimes used to treat lymphoma, but many people do not need it. It is an intensive treatment, so it is not suitable for everyone.

Getting support

Everyone has their own way of dealing with illness. You may have a lot of different emotions. This is normal. You may find it helpful to talk with family and friends or your doctor or nurse.

Macmillan is also here to support you. If you would like to talk, you can:

The organisations below also offer information and support:

  • Blood Cancer UK

    Blood Cancer UK offers support and information to people affected by blood cancers, including lymphoma.

  • Lymphoma Action

    Lymphoma Action gives emotional support, advice and information on all aspects of Hodgkin lymphoma and non-Hodgkin lymphoma. It has a national network of people with lymphoma, and local groups.

  • NAM Aidsmap

    NAM Aidsmap provides information for people living and working with HIV and AIDS.

  • The National Sexual Health Service

    The National Sexual Health Service provides free information, advice and counselling on all aspects of HIV, AIDS and sexual health. You can contact them on 0300 123 7123.

  • Positively UK

    Positively UK offers peer support services, including support groups for men and women, support groups for African people, counselling, a children and family service, and a helpline for people living with HIV.

  • Terrence Higgins Trust

    Terrence Higgins Trust offers advice and information on all aspects of HIV and AIDS, including counselling and support, health promotion and benefits advice. 

About our information

  • References

    Below is a sample of the sources used in our lymphoma information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

    Optimizing treatment of HIV-associated lymphoma. The American Society of Hematology. blood® 24 OCTOBER 2019 | VOLUME 134, NUMBER 17

    Non-Hodgkin’s lymphoma: diagnosis and management; NICE Guideline (July 2016) 

  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Professor Rajnish Gupta, Macmillan Consultant Medical Oncologist.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.