Treatment for mycosis fungoides or Sézary syndrome
Several treatments can be used to treat these types of skin lymphoma. Sometimes a combination of treatments is used.
About treatment for cutaneous (skin) lymphoma
Mycosis fungoides (MF) and Sézary syndrome (SS) are 2 types of skin lymphoma.
There are several treatments that can be used to treat these conditions. You can read more about each one in the following sections. Sometimes a combination of treatments is used. Some treatments may be offered as part of a clinical trial.
Your doctor or specialist nurse will explain your treatment options in detail. Here is an overview of the treatments used for each condition:
-
Mycosis fungoides treatment
For early stage MF, you usually have treatments to treat the affected skin directly. These include:
- skin creams
- phototherapy
- radiotherapy.
Drug treatments that work throughout the body may also be used. They are called systemic treatments because they treat lymphoma cells throughout the body not just in the skin. You might have a drug as tablets, or as an injection into a vein or under the skin.
You may have systemic treatments if:
- direct skin treatments are not controlling MF
- there is lymphoma in the lymph nodes or other organs
- there are many tumours on the skin.
Sometimes other treatments such as extra-corporeal photopheresis (ECP) or stem cell treatment are used to treat MF, but this is less common.
-
Sézary syndrome treatment
For SS, treatment usually involves drug treatments that work throughout the whole body. You may take these drugs as tablets. Or you may have them as an injection into a vein or under the skin. They are called systemic treatments because they treat lymphoma cells throughout the body, not just in the skin.
A treatment called extra-corporeal photopheresis (ECP) can also be used to treat lymphoma cells in the blood.
Other treatments may be used to help control any symptoms SS causes. For example, you may have radiotherapy to treat an area of lymphoma in the skin, lymph nodes or another part of the body.
Contraception during treatment
Some treatments for skin lymphoma can be harmful to a baby in the womb. Your team may advise you not to get pregnant or make someone pregnant during some types of treatment.
Follow your team’s advice about:
- what types of contraception to use
- how long after treatment you should continue to use contraception.
For cancer drug treatments such as chemotherapy, it is possible that small amounts may be passed on through vaginal fluids or semen. If you have sex during the treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.
Always tell your cancer team if you are pregnant or become pregnant. You can usually still have tests and treatment for lymphoma while pregnant. But it is important to talk to your doctor so they can plan your care safely.
Getting support
We understand that having treatment can be a difficult time for people. We are here to support you. If you would like to talk, you can do the following:
- Call the Macmillan Support Line for free on 0808 808 00 00.
- Chat to our specialists online
- Visit our cancer treatment forum to connect to people who have been affected by cancer, share your experience, and ask an expert your questions.
Skin creams
Skin creams (topical treatments) are drugs that are put directly onto the area where they are needed. Your doctor may prescribe steroid or chemotherapy cream to treat areas of your skin.
Your doctor, a nurse or a pharmacist will explain how to use the cream. It is important to follow the instructions they give you. They will tell you which areas of skin to use it on and any precautions.
Creams used to treat skin lymphoma include:
- steroids – these help reduce redness and swelling
- chemotherapy – these use anti-cancer (cytotoxic) drugs to destroy cancer cells.
You must wear gloves to protect your hands when you use chemotherapy cream.
Some people may have a reaction to skin creams. Tell your doctor if you have any side effects, such as redness or a burning sensation in the area.
Phototherapy
Phototherapy uses light to treat areas of skin. You have this treatment at an outpatient clinic. You have it in an air-conditioned cabinet that contains ultraviolet (UV) lights.
There are different types of phototherapy.
UVB therapy
UVB therapy uses a type of light called ultraviolet B light to treat the skin. You usually have this treatment a few times a week for several weeks.
UVB therapy can cause mild skin reactions similar to sunburn. If your skin tans easily in the sun, you may develop a tan during your course of treatment. Your team will give you information about skin care. Ask them for advice if you have any skin changes.
UVB therapy increases the risk of early ageing of the skin and of developing other types of skin cancer. The number of treatments you have is limited to reduce these risks. You should check your skin regularly after treatment for signs of skin cancer. Your doctor or specialist nurse can give you more information.
PUVA treatment
PUVA treatment combines a drug called psoralen with a type of light called ultraviolet A (UVA). This treatment is sometimes called photochemotherapy.
You can take psoralen as a tablet. Or you can soak in a bath with psoralen liquid. You usually take the tablet 2 hours before the UVA treatment. This is to allow enough time for the drug to reach your skin. If you have psoralen in a bath, you usually have to soak your body for 15 minutes.
Once the drug has had time to collect in your skin, you go into an enclosed cabinet to have the ultraviolet light treatment.
PUVA treatment causes similar skin side effects to UVB therapy. It also increases the risk of developing other types of skin cancer. You should check your skin regularly after treatment for signs of skin cancer.
During your treatment, your skin may be very sensitive to the sun. It is important to cover up and protect your skin from the sun to avoid sunburn. Do not use a sunbed or sun lamp.
You need to take extra precautions for 24 hours after having psoralen. During this time, you should protect your skin from sunlight, even through windows. If you take psoralen as tablets, you should wear sunglasses to protect your eyes outdoors or near fluorescent lights.
Psoralen tablets can make you feel sick. Taking your tablets with food can help with this. If you feel sick, your doctor can give you anti-sickness drugs to help. Sometimes your doctor may change psoralen to a different drug. We have information to help you manage nausea and vomiting.
During your course of PUVA treatment, your skin may become itchy or develop a reaction like a mild sunburn. If you have white skin, it may redden. If you have black or brown skin it might become darker. Tell your doctor or nurse if this happens. They can give you advice about creams that may help.
You may have this treatment a few times a week over several weeks until your skin improves. You may be able to have it again if your skin symptoms come back.
Radiotherapy
Radiotherapy uses high-energy rays called radiation to treat cancer. It destroys cancer cells in the area you have it.
You can have radiotherapy to treat an area of skin affected by lymphoma. We have more information about having radiotherapy treatment.
Side effects of radiotherapy
Possible side effects include a skin reaction and hair loss in the area being treated. Tell your doctor or radiographer about any side effects so they can help.
Total skin election beam therapy (TSEBT)
TSEBT treats all the skin on the body with radiotherapy at once. It may be used:
- if the lymphoma has spread over large areas of the skin surface
- if other direct skin treatments have not helped or have stopped working.
You can usually have TSEBT again, if needed. This treatment is only available at some hospitals.
Side effects of TSEBT
The side effects are mainly skin changes and hair loss. Some sweat glands may stop working. Your doctor can give you more information about this treatment and its effects.
Systemic drug treatments
Systemic treatments are drugs that work throughout the body not just in the skin. You might have these as tablets or as an injection into a vein or under the skin. Sometimes drugs are given as part of a clinical trial.
Chemotherapy
Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Cytotoxic means toxic to cells.
Chemotherapy may be used to control MF or SS. It is used if lots of tumours are on the skin or the lymphoma is affecting lymph nodes or other organs. It may also be used if other treatments are not controlling the lymphoma.
You have chemotherapy as an injection into a vein or as a tablet. You may have a single drug or a combination of drugs.
Chemotherapy drugs used to treat MF or SS include:
Targeted therapy drugs
Targeted therapy drugs use unique features of the cancer to find and treat cancer cells. These drugs may be used if lymphoma remains or comes back after other treatments. Targeted therapy drugs used include:
- brentuximab vedotin (Adcetris®)
- mogamulizumab
- alemtuzumab.
Interferon
Interferon is a protein that occurs naturally in the body. A laboratory-made version may be used to treat MF or SS. It works by boosting the body’s immune system to control the lymphoma. Interferon is injected under the skin (subcutaneously). It may be given on its own, or with other treatments.
Bexarotene
Bexarotene (Targretin®) is a type of drug called a retinoid. It may be used to treat MF or SS that has come back after other treatments. You take it daily as capsules. You may have it with other treatments, such as PUVA.
Bexarotene can affect the levels of fats in the blood and how your thyroid gland and liver are working. You will have regular blood tests to check for side effects. You doctor will explain the possible side effects and what to expect.
Extra-corporeal photopheresis (ECP)
ECP is a type of PUVA treatment for the blood. ECP treatment is used when there is a high level of abnormal lymphocytes in the blood. It may also help improve any skin symptoms caused by MF or SS.
A needle is placed in each arm. These are connected to a machine. The machine takes a small amount of blood from one arm. It collects some white blood cells which include the abnormal lymphocytes. It then returns the rest of the blood to the other arm.
When enough white blood cells have been collected, a drug called psoralen is added to them. This makes the cells sensitive to ultraviolet light (UVA). The white blood cells are treated with UVA and returned to the body.
Psoralen will make you very sensitive to the sun. For 24 hours after treatment, you should protect your skin from sunlight, even through windows. You should also wear sunglasses to protect your eyes outdoors or near fluorescent lights.
ECP can take several hours. You usually have treatment over 2 consecutive days as an outpatient. This is repeated every few weeks for several months. ECP is only available in some hospitals. Your doctor or nurse will give you more information.
Stem cell transplant
Rarely, stem cell transplants are used to treat MF or SS. Sometimes a donor stem cell (allogeneic) transplant is used after other treatments for advanced skin lymphoma. It can help prolong the effect of other treatments and keep the lymphoma under control for as long as possible.
About our information
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.
-
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 informationproductionteam@macmillan.org.uk
Cwynarski K, Marzolini MAV, Barrington SF, et al. The management of primary mediastinal B-cell lymphoma: a British Society for Haematology Good Practice Paper. Br J Haematol. 2019;185:402-9.
Eyre TA, Bishton MJ, McCulloch R, et al. Diagnosis and management of mantle cell lymphoma: A British Society for Haematology Guideline. Br J Haematol. 2024;204(1):108–26.
Ferreri AJM, Illerhaus G, Doorduijn K, et al., on behalf of the EHA and ESMO Guidelines Committees. Primary central nervous system lymphomas: EHA–ESMO Clinical Practice Guideline for diagnosis, treatment and follow-up. Ann Oncol. 2024;35(6):491-507.
Fox CP, Ahearne MJ, Pettengell R, et al. Guidelines for the management of mature T- and natural killer-cell lymphomas (excluding cutaneous T-cell lymphoma): a British Society for Haematology Guideline. Br J Haematol. 2022;196:507-22.
Fox CP, Chaganti S, McIlroy G, et al. The management of newly diagnosed large B-cell lymphoma: A British Society for Haematology Guideline. Br J Haematol. 2024;204(4):1178–92.
McNamara C, Montoto S, Eyre TA, et al. The investigation and management of follicular lymphoma. Br J Haematol. 2020;191:363-81.
Pratt G, El-Sharkawi D, Kothari J, et al. Diagnosis and management of Waldenström macroglobulinaemia—A British Society for Haematology guideline. Br J Haematol. 2022;197:171–87.
Walewska R, Eyre TA, Barrington S, et al. Guideline for the diagnosis and management of marginal zone lymphomas: A British Society of Haematology Guideline. Br J Haematol. 2024;204(1):86–107.
Date reviewed
Our cancer information meets the PIF TICK quality mark.
This means it is easy to use, up-to-date and based on the latest evidence. Learn more about how we produce our information.
The language we use
We want everyone affected by cancer to feel our information is written for them.
We want our information to be as clear as possible. To do this, we try to:
- use plain English
- explain medical words
- use short sentences
- use illustrations to explain text
- structure the information clearly
- make sure important points are clear.
We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.
You can read more about how we produce our information here.