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Genetic and Rare Diseases Information Center (GARD)

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Langerhans cell histiocytosis

Other Names for this Disease
  • Eosinophilic granuloma (formerly)
  • Hand-Schüller-Christian syndrome (formerly)
  • Histiocytosis X
  • LCH
  • Letterer-Siwe disease (formerly)
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Your Question

I'm an adult with LCH (non-pulmonary). What is a successful treatment regiment for adult Langerhans? I have read that it's different than it is for children since adults don't tolerate the same regiment well if they need chemo, but there's misinformation out there on the internet, and I may be facing this treatment in a few weeks. I would like to make an informed choice.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What specific treatment is recommended for adult Langerhans cell histiocytoma?

Due to a lack of clinical trials, there are limited recommendations available for adults with Langerhans cell histiocytosis (LCH).[1] Much of the knowledge about treatment is based on pediatric studies.[2] Most researchers have previously recommended treatment according to the guidelines for standard treatment of children with LCH. However, it has been unclear whether adult LCH responds as well as the childhood form of the condition. Additionally, some drugs used in the treatment of children may be less well-tolerated in adults.[1]

Due to the lack of information, a number of experts recently developed the first recommendations for management of adult patients with LCH. Their management recommendations were published in the Orphanet Journal of Rare Diseases; the free, full-text article can be viewed here. Due to the technical nature of this information, we recommend reviewing this article with a qualified healthcare provider.

Because the course of LCH is very diverse, even recommendations which are established as standard of care may need to be assessed on a case-by-case basis. Treatment for this condition depends on the site(s) and severity in each individual. Consultation with a LCH expert is recommended.[2]

Additional information about the treatment of adult LCH can be viewed on the National Cancer Institute's Web site.
Last updated: 12/2/2013