Skin lymphoma - cutaneous T cell lymphoma (CTCL)

Many skin lymphomas are slow growing, so you might not need treatment straight away. Doctors call this active monitoring or watch and wait.

Your doctor may suggest washing with a moisturising cream (emollient) or adding an emollient to the bath water. This is to help with skin dryness and relieve mild itching. Emollients help to prevent loss of water from your skin by creating a protective layer. 

It can be difficult to find out you have lymphoma and to not start treatment straight away. But treatment has side effects, so doctors don't want to give people treatment they don't need. You have regular check ups with your specialist.

Unlike other types of lymphoma, you can see your skin lymphoma. So you will know if it is changing or progressing. You can contact your doctor between appointments if you have concerns about this.

If your symptoms or lymphoma are getting worse, you can start treatment.

Treatment directly to the skin is also called topical treatment. It is helpful for early stage CTCL. Treatments include steroid creams or gels, and chemotherapy cream.

Steroid creams or gels

These help to relieve itching and can clear up patches or plaques of CTCL for long periods of time. Doctors generally prescribe topical steroids for short periods as they can cause side effects such as skin thinning in the affected area.

Chemotherapy cream

This is called topical chemotherapy. In the UK, doctors most commonly use chlormethine gel

You apply chemotherapy cream to the affected area daily or every other day. You need to wear gloves when putting the cream on because the chemotherapy drug harms normal skin.

Some people develop an allergic reaction to the chemotherapy and have to stop treatment for a while, or change to another drug.

Tacrolimus cream

This is a type of cream that acts on your ​immune system​ . It blocks a chemical which causes inflammation. This reduces skin inflammation.

Your doctor will tell you about how to apply the cream and what side effects you might have.

Light treatment (phototherapy) works well for skin lymphomas. Ultraviolet (UV) light is a type of light treatment. Doctors use it to treat a number of skin conditions. 

The sun produces a number of different ultraviolet UV rays, each with their own wavelength. Ultraviolet A (UVA) and Ultraviolet B (UVB) are both types of rays, or wavelengths. There are different types of UV light treatment for CTCL. You might have:

• psoralen ultraviolet light treatment (PUVA)

• narrow band UVB treatment (TLO-1)

Psoralen ultraviolet light treatment (PUVA)

Doctors use psoralen ultraviolet light treatment (PUVA) to treat plaques and larger areas of CTCL.

Psoralen (P) is a drug that makes your skin very sensitive to ultraviolet light (UVA) for about 24 hours. You usually take psoralen as tablets on the treatment day. About 2 hours later, you stand in a cabinet which shines ultraviolet light on to your skin.

Instead of taking psoralen as a tablet, you can sometimes have topical PUVA. This means you apply psoralen directly to the skin before UVA exposure. You might apply the psoralen by bathing or soaking part of your body in it. Or you by applying it as a gel directly to the affected areas of skin. 

Your doctor will tell you which method is best for you.

You usually have treatment 2 times a week until your skin lymphoma clears. Or you have it for a maximum of 30 treatments.

Oral psoralen also makes your eyes more sensitive to light, so on the day you have treatment you will need to wear sunglasses. You might need to wear these indoors if you are near bright windows, and you wear them outdoors until it is dark. Your doctor or nurse will give you advice about protecting your skin and eyes from ultraviolet light and for how long.

Short term side effects may include skin redness or dry and itchy skin. Tell your doctor or specialist nurse if you have any of these side effects.

One of the long term side effects of PUVA, particularly with higher doses, is an increased risk of non melanoma skin cancer. The risk depends on how many treatments you have.  Your doctor will weigh up the risks and benefits of treatment and talk you through them.

Your doctor will also talk to you about taking care in the sun, and will watch you for signs of skin cancer. Non melanoma skin cancers are treatable.

Read more about ultraviolet light treatment

Narrow band UVB treatment (TLO1)

This uses UVB light. The machine looks similar to PUVA but you do not need to take a drug that makes your skin more sensitive to light. 

TLO1 treatment does not go as deep into the skin as PUVA treatment. So you usually only have it to treat patches and very thin plaques of disease.

You have treatment 2 or 3 times a week until your skin lymphoma clears. You have up to a maximum of 30 treatments.

Short term side effects may include skin redness, dry and itchy skin, and a rash. In the long term, continuous or long term treatment might increase your risk of developing non melanoma skin cancer. But your doctor usually only offers a one off course of treatment a year for skin lymphoma. So this might not affect your skin cancer risk. Your doctor will talk to you about how this treatment affects your own risk of skin cancer. This will depend on your situation. 

Visit the British Association of Dermatologists to read more about narrow band UVB treatment

Radiotherapy uses high energy x-rays to kill cancer cells. Low dose radiotherapy to the skin (superficial radiotherapy) can work well for CTCL.

You might have radiotherapy for small localised plaques or tumours in the skin. Or you may have it for clearing up patches that remain after PUVA treatment. You usually have between 2 and 5 treatments. Doctors also call this localised radiotherapy.

Radiotherapy to the skin does not have very many side effects. The skin in the treatment area may become slightly red and sore. If you have radiotherapy to a part of the body that has hair, you will have some temporary hair loss. There is a small increased risk of non melanoma skin cancer in the treatment area.

Total skin electron beam therapy (TSEBT)

This is a type of radiotherapy. You have it in a specialist centre.

You have TSEBT to larger areas of CTCL that have not grown too deeply into the skin. You might have it if CTCL has not responded to other treatment, or has come back. TSEBT works well. But it doesn't keep the CTCL under control forever. But you can have treatment a second time when the lymphoma comes back.

You have it 4 to 5 days a week for between 2 and 5 weeks. Any areas of your body that are very sensitive or where the skin is thin will be protected. For example, you will have eye shields to protect your eyes.

You can get side effects up to 6 months after the treatment. They can include:

• itching, peeling skin

• hair loss

• reddening and swelling of the skin

• reduced sweating

• dryness of the skin

In the long term, there is an increased risk of developing other types of skin cancer. But your nurse and doctor will monitor you closely for this. The main concern is to treat the lymphoma.

Find out more about radiotherapy

Bexarotene is a retinoid. Retinoids are a group of drugs related to vitamin A. You might have it for more advanced CTCL or when it has come back after other treatments. You have it on its own or with another treatment.

You take bexarotene as a capsule. 

The main side effects include an increase in cholesterol and fat (triglyceride) levels in your blood, and a drop in thyroid hormones. You will have regular blood tests to check these. You take tablets to keep these levels within normal ranges. 

Your doctor might suggest you try another type of retinoid drug called acitretin. This drug is usually used for psoriasis and doesn't have a ​drug license​ for treating CTCL. It doesn't affect your thyroid gland in the same way as bexarotene.

Targeted cancer drugs work by targeting the differences in cancer cells that help them to grow and survive. Other drugs help the immune system to attack cancer. These are called immunotherapy.

Some drugs work in more than one way. So they are targeted as well as working with the immune system. 

Interferon (Peginterferon alfa 2a)

Interferon is a type of immunotherapy. You have interferon as an injection under the skin. You might have this once a week. You may have interferon on its own. Or together with other treatments. 

Interferon is also called peginterferon alfa 2a or Pegasys.

Read about peginterferon alfa 2a

Brentuximab and mogamulizumab 

Brentuximab and mogamulizumab are both types of ​monoclonal antibodies.​ These drugs target specific proteins on cancer cells. 

Brentuximab targets a protein called CD30. Mogamulizumab targets a protein called CCR4 on T cells. 

You might have one of these treatments for more advanced CTCL if you have already tried another drug treatment. And if your lymphoma has come back or is still growing.

Read more about Brentuximab

Chemotherapy uses anti cancer (cytoxic) drugs to destroy cancer cells. You can have it as tablets or into a vein (intravenously).

You usually only have chemotherapy if your CTCL is advanced. You have it to control symptoms and make you more comfortable. Chemotherapy often works well for CTCL, but unfortunately the response does not usually last very long. It may help for months rather than years.

Types of chemotherapy

You might take one of the following chemotherapy drugs as a tablet:

• chlorambucil

• etoposide

Or you might have chemotherapy through a drip into a vein. Drugs include:

• gemcitabine

• pentostatin (Nipent)

• fludarabine

• liposomal doxorubucin

You might have one chemotherapy drug or a combination of drugs.

Find out more about chemotherapy

Extracorporeal photopheresis (ECP) uses ultraviolet light. But unlike PUVA, it treats your white blood cells, not just your skin. 

You might have it for advanced CTCL, or for Sezary syndrome. It is only available in some specialist centres. 

How you have it

To have the treatment your nurse connects you to a special machine by a drip. Your blood goes through the machine, which separates off some of your white blood cells. Your blood, minus the white blood cells, then goes back into your vein.

The nurse or doctor treats the separated white blood cells with a light sensitising drug (psoralen). They then expose them to ultraviolet light (UVA). This light activates the drug so that it is able to destroy the lymphoma cells.

After this process, your nurse gives back the treated white blood cells into your vein. You usually have the treatment again the following day.

The treatment itself takes between 3 and 4 hours, and you have the 2 day cycle every 2 to 4 weeks. Many people have this treatment for a year or more.

You may have ECP with other treatments such as bexarotene or interferon.

Side effects

Having this procedure does not hurt, but some people may feel a bit weak or dizzy during or after it.

Afterwards your skin and eyes may be more sensitive to sunlight for about 24 hours. So you need to protect yourself from the sun and also need to wear sunglasses.

A few people with advanced CTCL have a stem cell transplant. Doctors usually only suggest this type of treatment to people who are young and fit and are most likely to be able to cope with the side effects.

You can have a stem cell transplant after very high doses of chemotherapy. The chemotherapy kills the lymphoma cells and also the stem cells in your ​bone marrow​ . You might also have radiotherapy, After the chemotherapy and radiotherapy you have the new stem cells into your bloodstream through a drip. 

The cells find their way back to your bone marrow. Your body then starts making blood cells again and your bone marrow slowly recovers. The new cells also help destroy any remaining cancer cells. 

How you have it

Stem cells are very early blood cells in the bone marrow that develop into red blood cells, white blood cells and platelets. We need stem cells in order to survive.

Before a transplant, you have high dose treatment to destroy the stem cells in the bone marrow. After the high dose treatment you have stem cells or bone marrow into a vein through a drip. Then your body makes the blood cells you need again.

For CTCL, you usually have stem cells or bone marrow from another person. This is called an allogeneic stem cell transplant. 

Find out more about stem cell and bone marrow transplants