n HOW SUCCESSFUL IS THE TREATMENT? Most children with LCH respond well to treatment. Long-term survival for single-system disease is nearly 100%. Survival for multisystem disease is more varied. Many children with multisystem disease may experience periods of remission and reactivation before the disease is cured. n WHAT IF THE DISEASE RECURS? A recurrence of LCH is not the same as a cancer relapse. Some children with LCH may go through several remissions and reactivations before the disease finally goes away for good. If the disease recurs, your child’s doctor may recommend a different group of chemotherapy medicines or other types of medications that are known to have an effect on the immune system.
n WHAT NEW TREATMENTS EXIST? In addition to the standard chemotherapy, a variety of other promising agents, including cladribine, thalidomide, and biotherapy medications, as well as stem-cell transplants, are being investigated to treat LCH. The effectiveness of these treatments is still being studied.
n WHAT IS DIABETES INSIPIDUS, AND WHY IS IT ASSOCIATED WITH LANGERHANS CELL HISTIOCYTOSIS? Diabetes insipidus (DI) is a hormonal imbalance that is caused by dysfunction of the pituitary gland in the brain. DI occurs in more than 50% of children diagnosed with LCH. Children who are most likely to develop DI are those with bone lesions in the front of the head, including the face. Symptoms may not be present at the time of diagnosis but may show up 6–12 months later. Symptoms of DI include excessive thirst, an obsession with wanting to drink fluids all the time (day and night), and increased urination. There is no cure for DI, but symptoms can be controlled with medication. If your child wants to drink more frequently than usual—and needs to get up several times during the night to drink—and is going to the bathroom frequently during the day and night or has started wetting the bed, tell your child’s healthcare team about these symptoms. It is important to know that DI does not go away when the LCH is cured; however, your child may see improvement in symptoms.
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