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Langerhans Cell Histiocytosis Treatment (PDQ®): Treatment - Patient Information [NCI] - Treatment Option Overview for LCH

There are different types of treatment for patients with Langerhans cell histiocytosis (LCH).

Different types of treatments are available for patients with LCH. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment. Whenever possible, patients should take part in a clinical trial in order to receive new types of treatment for LCH.

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Clinical trials are taking place in many parts of the country. Information about ongoing clinical trials is available from the NCI Web site. Choosing the most appropriate treatment is a decision that ideally involves the patient, family, and health care team.

Children with LCH should have their treatment planned by a team of health care providers who are experts in treating this disease in children.

Treatment will be overseen by a pediatric oncologist, a doctor who specializes in treating children with cancer. The pediatric oncologist works with other pediatric healthcare providers who are experts in treating children with LCH and who specialize in certain areas of medicine. These may include the following specialists:

  • Primary care physician.
  • Pediatric surgeon.
  • Pediatric hematologist.
  • Radiation oncologist.
  • Neurologist.
  • Endocrinologist.
  • Pediatric nurse specialist.
  • Rehabilitation specialist.
  • Psychologist.
  • Social worker.
  • Geneticist.

Some treatments for LCH cause side effects months or years after treatment has ended.

Some treatments cause side effects that continue or appear months or years after treatment has ended. These are called late effects. Late effects of treatment for LCH may include the following:

  • Slow growth and development.
  • Hearing loss.
  • Bone, tooth, liver, and lung problems.
  • Changes in mood, feeling, learning, thinking, or memory.
  • Risk of cancer related to treatment.

Some late effects may be treated or controlled. It is important to talk with your child's doctors about the possible late effects caused by some treatments.

Many patients with multisystem LCH have late effects caused by treatment or the disease itself. These patients often have long-term health problems that affect their quality of life.

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