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One of the problems in describing this disease is that it doesn't look the same for all patients. Patches, plaques and tumors are the clinical names of the different presentations. A common characteristic is itching, although some patients do not experience itching. It is possible to have one or all three types of lesions. Some people have had the disease for many years and have only dealt with one presentation.
The course of CTCL is unpredictable. Some patients will progress slowly, rapidly or not at all. Most patients will only experience skin symptoms without serious complications. About 10 percent will experience progressive disease with lymph node and/or internal involvement with serious complications.
"It's so important for people with rare diseases to volunteer for clinical trials, because this is the only way new treatments can be developed and approved," says Judy Jones, a CTCL patient who took part in a clinical trial and has now been in remission for 16 years. She also founded the Cutaneous Lymphoma Foundation. "Drugs work differently for different people, and if you have CTCL you can help scientists figure out who a new drug might help and why."
One company that is conducting clinical trials of a product candidate for the treatment of CTCL is Gloucester Pharmaceuticals. The company's first drug candidate, romidepsin (depsipeptide), is in clinical trials for the treatment of CTCL patients.
"If you have CTCL," adds Jones, "talk to your doctor about clinical trials going on right now and how to participate. You'll be helping a lot of other people and if the drug works for you like mine did, you'll be helping yourself, too."
For more information on Gloucester's clinical trials, call 888-474-0131 or visit www. gloucesterpharma.com. Clinical trials are a crucial component of testing new drugs and other treatments for diseases such as CTCL.
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