Non-Hodgkin lymphoma and HIV

Non-Hodgkin lymphoma (NHL) is one of the two most common cancers in people living with HIV in the UK (the other is Kaposi's sarcoma). It is also the sixth most common in the general population. The damage HIV does to the immune system makes people living with HIV more vulnerable to NHL than other people.

Cancers happen when some of the body’s cells begin to divide without stopping and spread into surrounding tissues. These cells build up over time and can form a cancer.

Non-Hodgkin lymphoma (NHL) is a cancer of the lymphocytes. These are white blood cells that help to fight infections. Lymphocytes travel around your body in your lymphatic system, which is part of your immune system. The lymphatic system includes lymph nodes (glands) as well as organs of your immune system like your thymus, spleen and bone marrow.

Healthy lymphocytes collect in your lymph nodes ready to fight infection. There are groups of lymph nodes in the neck, armpits, groin, chest, and abdomen – they often swell when they are fighting an infection.

In NHL, lymphocytes keep dividing and grow out of the body’s control. Over time, the number of abnormal lymphocytes increases, and collect in your lymph nodes, or elsewhere in the body.

There are many different types of NHL. The type of NHL you have may determine which type of treatment is best for you. In people with HIV, the most common types of NHL are called diffuse large B-cell lymphoma (DLBCL) and Burkitt lymphoma (BL).

As well as non-Hodgkin lymphoma, you may also hear about Hodgkin lymphoma. This is a different cancer of the lymphocytes and is treated in a different way.

Non-Hodgkin lymphoma in people living with HIV

People with weakened immune systems, including people living with HIV, are at greater risk of having NHL than other people. People living with HIV, including people taking effective treatment, are about ten to twenty times more likely to develop NHL than people without HIV.

People with HIV who are not taking anti-HIV treatment or who have a low CD4 count are at greater risk than other people with HIV.

As in the general population, older people living with HIV are at greater risk of having NHL.

If you are diagnosed with NHL but you haven’t been tested for HIV, your doctor might suggest you take an HIV test. This is because people who have NHL sometimes have HIV without realising it.

People with HIV are more likely than other people to be diagnosed when their lymphoma is at a more advanced stage. It may also grow faster (be more ‘aggressive’) than in other people, and may be found outside the lymph nodes, for example in the bone marrow, liver, or lungs.

In a person living with HIV, NHL may be described as an ‘AIDS-defining’ cancer. This is because it usually occurs when the immune system is very weak.

It’s important to know that treatment for NHL can work very well in people living with HIV. Cure rates for HIV-positive people who take chemotherapy and HIV treatment are similar to those in the general population. You can also expect HIV treatment to keep you in good health for years to come.

Symptoms

The symptoms of lymphoma depend on where the lymphoma is and what type of lymphoma it is. You may not notice anything, but NHL can cause a painless lump or swelling, often in the neck, armpit or groin (a swollen lymph node).

A lymphoma in the stomach or bowel may cause indigestion, abdominal pain or weight loss.

A lymphoma in the chest area may result in a cough, difficulty swallowing or breathlessness.

You might also have weight loss, fever, or night sweats. In people with lymphoma, these are called ‘B symptoms’.

Diagnosis and monitoring

The most important test for diagnosing lymphoma is a biopsy. This involves a doctor or nurse taking a sample of tissue from the affected area (for example, an enlarged lymph node or bone marrow).

Some people will be given a general anaesthetic and so will be asleep when it is done, while other people will only need a local anaesthetic, which numbs the area. The tissue sample is then sent to a laboratory to be checked for lymphoma cells.

You may also need a CT (computerised tomography) scan. This takes X-ray images from multiple angles, which build up a three-dimensional picture of inside your body. This allows your doctors to see how far the lymphoma has spread and if treatment is working.

A CT scan involves you lying on an examination table which slides through a large machine. You will usually need to drink or be injected with a type of dye (called a contrasting agent) before the procedure.

Depending on the type of lymphoma you have, you might have a PET/CT scan, which combines a CT scan with a positron emission tomography (PET) scan. The PET scan uses low-dose radiation to measure the activity of cells in different parts of the body – it gives more detailed information about which parts of the body have active (growing) lymphoma.

Blood tests will also be needed, to measure the amounts of certain types of cells and chemicals in your blood. 

Treatment and management

When considering your treatment options, you and your healthcare team should consider the type of lymphoma you have, how advanced it is, which part(s) of your body are affected, your general health, and your personal priorities.

Depending on your circumstances, treatments may have different aims. These may be to try to cure the NHL, to control it for as long as possible, or to relieve symptoms.

You should ask your doctor about the possible benefits of a treatment, what risks and side-effects could be involved, what other treatments are available, and what is likely to happen without treatment.

Chemotherapy is the main treatment for most types of NHL. It uses strong drugs to destroy cancer cells and prevent the cancer from spreading. Chemotherapy drugs kill cells that are growing fast, including cancer cells. However, they can’t tell the difference between cancer cells and normal fast-growing cells in the body – this is what causes the side-effects of chemotherapy.

A combination of different chemotherapy drugs may be given into a vein (intravenously), as tablets, or by another method. Depending on the chemotherapy regimen, you may be able to visit the hospital as an outpatient (day patient), or you might need to stay in hospital for a few days.

Monoclonal antibodies are a type of immunotherapy. They are man-made drugs that make the immune system recognise and attack cells that have a certain substance on their surface. These drugs can target the lymphoma cells more precisely than chemotherapy can. The most commonly used monoclonal antibody is called rituximab, which is given as a drip into a vein.

You might be given chemotherapy and monoclonal antibodies at the same time. This is sometimes called chemoimmunotherapy.

Radiotherapy uses radiation to destroy cancer cells. It’s usually given using a large machine that aims radiation to the specific part of your body where the lymphoma is. Radiation is usually used for early-stage lymphoma that hasn’t spread.

Other therapies for NHL include CAR-T (another type of immunotherapy), steroids, and cancer growth blockers.

HIV treatment should be taken as normal during your treatment for NHL. It will make your immune system stronger and can help keep NHL under control. If you are not already taking HIV treatment, you are strongly recommended to start. Your doctor should check that there are not any drug-drug interactions between your treatments for NHL and HIV.

Treatment for NHL as well as the cancer itself can lower your levels of white blood cells (a condition called neutropenia). This makes you more at risk of dangerous infections. Your doctors and nurses can explain what signs of infection to look out for and what to do if you think you have an infection. You may also be given other treatments to reduce your risk of infections.

Like any other treatment, cancer treatments can have side effects which can sometimes be unpleasant. Each treatment has different side effects and it’s important to ask about the potential side effects of the specific treatment that is suggested for you. For example, not all chemotherapy drugs make your hair fall out. You may be given additional medications to counteract side effects.

As treatments for HIV and cancer can both cause side effects, your doctors should keep an eye on how they are affecting you. In some cases (such as nausea from chemotherapy), highly effective treatments to limit side effects are now available. If side effects become too severe, your doctors may need to adjust one of the treatments.

There can be drug-drug interactions between cancer treatments and HIV treatments. For this reason, it may be necessary to make some adjustments to your HIV treatment or your cancer treatment.

Because of these issues, it's very important that the doctors treating your cancer and your HIV work together. There should also be contact between the pharmacists in the cancer and HIV clinics. 

A multi-disciplinary team will make recommendations about your treatment. This team may include a haematologist (a doctor who specialises in treating blood cell disorders), an oncologist (a doctor who specialises in treating cancer), a radiologist (a doctor who interprets the results of scans or provides radiotherapy), a pathologist (a doctor who examines tissue for cancer cells) and a dermatologist (a doctor who specialises in skin conditions). You will be supported by a cancer specialist nurse during your cancer journey. Palliative care can relieve pain and other symptoms and help you maintain the best possible quality of life.

Information and support

For more information, you may find these two organisations helpful:

• Macmillan Cancer Support: www.macmillan.org.uk. You can also contact their helpline team on 0808 808 0000.
• Lymphoma Action: lymphoma-action.org.uk. Their helpline team is available on 0808 808 5555.