Learning that you or your loved one’s skin symptoms are caused by CTCL can raise a lot of questions. Finding answers and learning more can help you to take an active role in your care.
Below are answers to some common questions about CTCL and the skin symptoms it may cause. Remember that your healthcare team is always the best source of information about your diagnosis and treating your skin symptoms.
About CTCL
CTCL is a rare type of lymphoma. This type of cancer is caused by cancerous T-Cells. T-Cells are a type of white blood cell that help find and fight infection throughout the body, including in the skin. When cancerous T-Cells live in the skin, it is known as Cutaneous (skin) T-Cell Lymphoma.
Right now, there is no known cause of CTCL. It is not a genetic disease, so it is unlikely that you can pass it on to your children. CTCL is not contagious, so it cannot be spread to someone else. No known environmental factors, such as chemicals or toxins, have been linked to CTCL at this time.
In the United States, it is thought that more than 20,000 people have CTCL. Each year, about 1200 more people will learn they have CTCL. CTCL is hard to diagnose, so these numbers are only estimates.
CTCL is a cancer caused when lymphocytes, a type of white blood cell, change and travel through the blood but affect the skin.
Once there, they cause the rash that is the main sign and symptom of CTCL.
CTCL is a type of blood cancer, not a type of skin cancer. CTCL involves T-Cells—a type of white blood cell—that change and travel through the blood and affect the skin.
Mycosis fungoides (MF) and Sézary syndrome (SS) are the 2 most common forms of CTCL. MF tends to progress slowly and does not usually spread beyond the skin. SS, though, can be more aggressive, with cancerous cells being found in the blood throughout the body.
The signs and symptoms of CTCL can look different in MF and SS. People with MF usually have flat, red, scaly patches, or thick, raised lesions called plaques, or large bumps. People with SS often have very itchy, scaly skin that is red all over.
Talk with your healthcare team about your signs and symptoms. Ask which type of CTCL you have, and which treatment is right for you.
Most forms of CTCL are called indolent. That means that they grow slowly and are chronic. Some types, including Sézary syndrome, can be more aggressive.
Talk with your healthcare team to be sure you know what type of CTCL you have and what treatment options can best manage your CTCL skin symptoms.
CTCL skin symptoms
Doctors have many ways of describing the skin symptoms of CTCL. For example, patches are the flat, rash-looking changes that may also make the skin scaly. Plaques are areas of skin that look like a thick, raised lesion. Bumps or nodules may also happen. Some people have one or all of these signs and symptoms. Many people also report itchy skin.
Talk with your healthcare team about your CTCL skin symptoms and what you can do to help control them.
Often doctors use staging to help figure out the best treatment option. There are 4 stages of CTCL, each with different parts. The higher the stage, the more:
Ask your healthcare team about your CTCL skin symptoms and which treatment may be right for you. You may also want to download the Decision Aid to talk about what is important to you in a treatment.
CTCL is a form of cancer caused when a certain type of blood cell changes and grows out of control. The skin symptoms are not a sign of an infection. They are not contagious, and cannot be spread to another person.
CTCL skin symptom treatments
There are no treatments that can cure CTCL or its skin symptoms. Some treatments, though, are able to help manage the skin symptoms. Talk with your doctor about your CTCL skin symptoms and what you can do to help manage the symptoms.
There are 2 main types of treatments for skin symptoms.
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Skin-directed treatments target skin lesions. These include ultraviolet (UV) light, steroids, local radiation, and chemotherapy and retinoids that are put on the skin
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Systemic treatments work throughout the body. These include photopheresis, retinoids taken by mouth, interferon, and chemotherapy
Talk with your healthcare team about your CTCL skin symptoms and what you can do to help control them.
Download the handout to learn more about CTCL skin symptoms.
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IMPORTANT SAFETY INFORMATION
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DO NOT USE UVADEX IF:
The information below is about the use of UVADEX® (methoxsalen) Sterile Solution with the THERAKOS CELLEX® Photopheresis System for the treatment of skin conditions associated with Cutaneous T-Cell Lymphoma (CTCL) unresponsive to other types of treatment.
It is recommended that you discuss the therapy and your conditions with your doctor.
What is UVADEX (methoxsalen [meth-ox-sah-len]) Sterile Solution?
UVADEX (methoxsalen) Sterile Solution is used with the THERAKOS CELLEX Photopheresis System for the treatment of skin problems associated with CTCL in patients who have not responded to other types of treatment given by their doctor.
IMPORTANT SAFETY INFORMATION
DO NOT USE UVADEX IF:
WARNINGS
SIDE EFFECTS OF UVADEX
For the THERAKOS CELLEX Photopheresis System procedure:
What is the THERAKOS Photopheresis System procedure?
The THERAKOS CELLEX Photopheresis System procedure is a medical procedure in which blood from a patient is collected into a specialized machine that separates the white blood cells from the other blood components. The other blood components are returned to the patient and white blood cells are then treated with UVADEX, which makes them sensitive to ultraviolet light. The treated white blood cells are exposed to UVA irradiation inside the machine, and then returned to the patient. This medical procedure is used to treat skin problems associated with CTCL in patients who have not been responsive to other forms of treatment given by their doctor.
DO NOT UNDERGO THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE IF:
WARNINGS FOR THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE
SIDE EFFECTS OF THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE
These are not all of the possible side effects of the THERAKOS Photopheresis System procedure.
Tell your doctor about any side effects that bother you, or that do not go away. Call your doctor or pharmacist for medical advice about side effects. You may report side effects to the FDA.
Call 1-800-FDA-1088 or visit www.fda.gov/medwatch. You may also report side effects by calling Mallinckrodt at 1-877-566-9466.
Please see the full Prescribing Information, including the BOXED WARNING, for UVADEX.