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Cutaneous Lymphoma Foundation
Box 374
Birmingham, MI 48012-0374
Phone: (248) 644-9014 Fax: (248) 644-9014
email: info@clfoundation.org
website: www.clfoundation.org

Photopheresis

Photopheresis is an immunotherapy. It is a three to five hour procedure in which a portion of a patient's blood is taken out through a vein, the white blood cells are treated with ultraviolet A (UVA) and a drug 8-methoxsalen, and the blood is reinfused back into the vein. It is well tolerated and has few side effects. It is believed that photopheresis helps create a vaccine-like effect against the CTCL cells by the patient's immune system. Photopheresis is most often used for advanced stages of CTCL with evidence of circulating CTCL cells in the blood. Patients are treated on two successive days, four weeks apart. Usually, six to nine treatments are required before a therapeutic effect may be seen. Photopheresis is often combined with other therapies. For further information, please visit www.therakos.com (this is an external link that will open in a new window).

Photopheresis Frequently Asked Questions

Information provided by:
Therakos

What is photopheresis?
Photopheresis is a medical treatment prescribed by your doctor. The process separates out some of your white blood cells (WBCs) from the rest of your blood and exposes them to ultraviolet light after adding a drug, UVADEX® (methoxsalen). When exposed to ultraviolet A (UVA) light, the drug becomes activated, which then modifies the function of white blood cells, allowing them to treat your disease. Depending on your medical condition, this may help your body control the cells that contribute to your disease.

How does photopheresis work?
There are several possible theories on the way photopheresis works. One theory is that when the treated white cells are returned to the body, the immune system senses a difference and the body works to eliminate diseased cells. A specialized doctor who can best explain exactly what is happening always administers this therapy.

What is photopheresis used for?
Currently photopheresis is indicated to alleviate skin problems associated with Cutaneous T-Cell Lymphoma (CTCL). In CTCL, a certain kind of T lymphocyte may be contributing to problems you are experiencing with your skin.

What happens to me during photopheresis?
After your doctor prescribes photopheresis, a trained medical person inserts a needle or catheter into your vein. Some of your blood is then removed, just like when you have a blood test or give blood. This blood goes into a machine that separates the blood cells. Everything is returned to you immediately, except your white blood cells. These are treated with UVADEX and then moved through a light panel so that the UVA light can reach them. After the light therapy, your white blood cells are returned to you.

Does the procedure hurt?
Photopheresis hurts about the same as the needle stick you feel when you give blood or have a blood test.

How long does it take?
The time may vary from patient to patient and sometimes from treatment to treatment. It usually takes three to five hours from start to finish.

How often do I need a treatment?
That depends on your medical condition and your doctor's assessment. For patients with CTCL, two successive treatments a month are recommended. Your doctor will select a schedule best suited to your needs.

Does photopheresis have side effects?
Like all therapies especially those involving medicine, photopheresis can cause some unwanted effects. Any complication that happens from a needle stick can happen during photopheresis, such as a small chance of infection. Since you will have a small part of your blood volume outside of your body for a short period, you might feel weak or dizzy during or immediately after the procedure. Since an anti-coagulant or blood thinner is used while the blood is in the device, there is a small risk of bleeding during or after the procedure. This is usually only a concern in patients with pre-existing clotting or bleeding problems. Anything that you experience should be reported to the medical staff. Since a little of your blood stays in the tubing, your doctor will need to watch your blood pressure and blood count. You may be exposed to a small amount of UVADEX when the white blood cells are returned to your body. This may make you more sensitive to sunlight. If you have any diseases that make you more sensitive to light or you are taking any medicines that make you more sensitive to the sun, discuss this with your doctor. A few patients have reported low-grade fever, or increased redness of skin 6 to 8 hours after a treatment.

Since this treatment involves blood, are there any risks?
Photopheresis is done with sterile techniques and the only blood to which you will be exposed is your own. A new sterile kit is used for each treatment procedure. Your blood touches no other blood. Your doctor should be aware of your blood counts and blood pressure and determine if you will be able to tolerate the temporary removal of some of your blood for two or more hours. Patients who have an allergy to psoralen drugs should not have photopheresis treatments.

What do I do after a treatment?
For twenty-four hours after a treatment, you should wear wrap-around sunglasses that provide UVA light protection. Avoid sunlight for a day and protect any exposed skin with sun block (at least SPF15), especially if you have a history of skin cancer.

Will photopheresis work for me?
Your doctor has prescribed this treatment because he or she hopes there will be a benefit for you. Everyone is different and photopheresis may not work for you. Clinical trial patient data indicates that about one half the patients studied saw some improvement in their skin involvement. It generally takes several treatments to see an effect.

Why does my doctor call this treatment by a lot of other names like ECP?
Photopheresis is called other names like photoimmune therapy or extracorporeal photoimmune therapy or ECP. These refer to the same treatment.

Will my health insurance pay for this?
Medicare has approved photopheresis for reimbursement whether you are an inpatient or outpatient where the treatment is medically necessary and reasonable. A number of insurance companies may reimburse for photopheresis treatments. You should consult your insurance company about your coverage.

 

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