Treatment for cutaneous T-cell lymphoma CTCL
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About treatment for cutaneous T-cell lymphoma (CTCL)
A team of specialists will meet to discuss the best possible treatment for you. They are called a multidisciplinary team (MDT).
Your cancer doctor or specialist nurse will explain the different treatments and their side effects to you. They will also talk to you about the things you should consider when making treatment decisions.
There are several treatments that can be used for cutaneous T-cell lymphoma CTCL. Sometimes a combination of treatments is used. Your specialist will discuss your options with you.
Doctors usually use treatments to treat the skin directly when CTCL is at an early stage. These include:
- steroid or chemotherapy cream
- UVB therapy
- PUVA (light treatment)
- radiotherapy.
Sometimes treatments that work throughout the body are used. These treatments may be given as tablets, or as an injection into a vein or under the skin. They are then carried in the blood to all areas of the body.
You may have these treatments if:
- direct skin treatments are not controlling the CTCL
- CTCL is affecting the lymph nodes or other organs
- there are a lot of tumours on the skin.
Pregnancy and treatment
Some treatments for CTCL can be harmful to an unborn child or a baby conceived during treatment.
You may be advised not to become pregnant, or make someone pregnant, during treatment for CTCL. Your doctor will explain what contraception you should use and for how long after treatment.
It is important to tell your doctor if you are pregnant, or become pregnant, during treatment for CTCL.
If you are a man, you may also need to use barrier contraception, such as a condom, if your partner is pregnant.
Skin care
Skin care is important for all stages of CTCL. Your specialist nurse and doctor can give you more advice about looking after your skin. They may suggest moisturising creams or bath lotions to prevent dry skin. This helps your skin feel more comfortable, less itchy and helps prevent skin infections.
Getting support
We understand that having treatment can be a difficult time for people. We're here to support you. If you want to talk, you can:
- Call the Macmillan Support Line on 0808 808 00 00.
- Chat to our specialists online.
- Visit our T-cell lymphomas forum to talk with people who have been affected by T-cell lymphoma (CTCL), share your experience, and ask an expert your questions.
Skin creams for cutaneous T-cell lymphoma (CTCL)
Skin creams (or 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.
Steroids are drugs that help reduce redness and swelling. A steroid cream may be the only treatment you need to control early-stage CTCL.
Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Your doctor or nurse will explain exactly how to use a chemotherapy cream and which areas of skin to use it on. You must wear gloves to protect your hands when you use it.
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.
UVB therapy
UVB light (a type of ultraviolet light) is sometimes used to treat CTCL. The treatment is given in using an air-conditioned cabinet containing ultraviolet lights. You may have treatment a few times a week for several weeks.
Side effects of UVB therapy
UVB treatment tans the skin and can cause early ageing of the skin. It also increases the risk of developing other types of skin cancer. The number of treatments you have is limited to reduce this risk. 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 (sometimes called photochemotherapy) is mainly used to treat skin symptoms during early CTCL. It uses a drug called psoralen (P), which makes your skin sensitive to ultraviolet light (UVA). You can take psoralen as a tablet or you can soak in a bath with psoralen liquid.
The tablets are usually taken 2 hours before the UVA light 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, air-conditioned cabinet to have the ultraviolet light treatment. You may have this treatment a few times a week over several weeks until your skin improves. Sometimes, PUVA can be used again if your skin symptoms come back.
Side effects of PUVA
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, the drug psoralen will make you 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 taking the psoralen. During this time, you should protect your skin from sunlight even through windows. If you took psoralen as tablets, you should wear sunglasses to protect your eyes outdoors or near fluorescent lights.
Psoralen tablets can make you feel sick. It can help to take your tablets with food. If you feel sick, your doctor can give you anti-sickness (anti-emetic ) drugs to help. Sometimes they may change the psoralen to a different drug. We have information to help you manage nausea and vomiting.
During your course of PUVA, your skin may become itchy or red, like a mild sunburn. Tell your doctor or nurse if this happens. They can give you advice about creams that may help.
Radiotherapy
Radiotherapy uses high-energy rays to destroy cancer cells, while doing as little harm as possible to nearby healthy cells. It is an effective treatment for early CTCL. It can be used to treat an area of the body affected by CTCL.
Side effects of radiotherapy
Possible side effects include redness of the skin and hair loss in the area being treated. Let your doctor or radiographer know about any side effects so they can help.
Total skin election beam therapy (TSEBT)
Total skin electron beam therapy (TSEBT) treats all the skin on the body with radiotherapy at once. It may be used:
- if CTCL has not spread below the skin surface
- if other direct skin treatments have not helped or have stopped working.
TSEBT can usually be repeated once more, 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.
Chemotherapy
Chemotherapy may be given to help control CTCL. It is used if there are lots of tumours on the skin or if the lymph nodes or other organs are affected. It may also be used if other treatments are not controlling the CTCL.
Chemotherapy may be given by injection into a vein or as a tablet. You may be given a single drug or a combination of drugs.
Chemotherapy drugs used to treat CTCL include:
Targeted therapy
Targeted therapies are drugs that use unique features of the cancer to find and treat cancer cells. A drug called brentuximab vedotin may be used if there are still signs of CTCL or it comes back after other treatments.
Interferon
Targeted therapies are drugs that use unique features of the cancer to find and treat cancer cells. A drug called brentuximab vedotin may be used if there are still signs of CTCL or it comes back after other treatments.
Bexarotene
Bexarotene (Targretin®) is a type of drug called a retinoid. It may be used to treat CTCL that has come back after other treatments. It is taken daily as capsules and may be used 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. This may also help improve any skin symptoms caused by CTCL.
You have a needle placed in each arm and these are connected to a machine. The machine takes a small amount of your blood from one arm. It collects some white blood cells (which include the abnormal lymphocytes) and returns the rest of the blood to your 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 ultraviolet light and are then returned to your body.
After ECP, the drug psoralen will make you very sensitive to the sun. For the next 24 hours, 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.
Clinical trials for CTCL
Your doctor may talk to you about clinical trials. Clinical trials for CTCL may:
- test new treatments or new ways of giving treatments
- record information about your condition.
About our information
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References
Below is a sample of the sources used in our cutaneous T-cell lymphoma (CTCL) information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk
Willemze R, Hodak E, et al on behalf of the ESMO Guidelines Working Group. Primary cutaneous lymphomas: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology. 2018. 29 (Supplement 6), IV30-IV40. Available from Primary cutaneous lymphomas: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up - Annals of Oncology.
National Institute of Health and Care Excellence (NICE). Blood and bone marrow cancers. NICE Pathways. Last accessed 3 December 2020.
National Institute of Health and Care Excellence (NICE).Brentuximab vedotin for treating CD30-positive cutaneous T-cell lymphoma (CTCL). Technology appraisal guidance (TA577). Published April 2019. Available at Overview | Brentuximab vedotin for treating CD30-positive cutaneous T-cell lymphoma | Guidance | NICE.
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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, Dr Anne Parker, Consultant Haematologist.
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