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Histiocytosis Treatment Process


Your child is unique. That's why the histiocytosis treatment team will work with you to craft a treatment plan that is just right for your child.

The St. Jude histiocytosis treatment team has more than 40 years of cumulative experience in treating these rare and complex disorders. We will tailor a treatment plan that takes your child’s individual needs into account. 


When your child has symptoms of a histiocytic disorder, many tests will be done to learn more about the condition. These may include:

  • Blood tests. Doctors take a blood sample, which is sent to a lab. Scientists will test the sample to see whether there are too many of certain types of immune cells, and if those immune cells are over-active. That can help doctors decide if your child likely has a histiocytic disorder. However, blood tests alone are not enough for a diagnosis.
  • Imaging studies. These tests take pictures inside the body to look for signs of histiocytosis. Different types of imaging scans include:
    • X-rays
    • MRI (magnetic resonance imaging) uses radio waves and a strong magnet to take pictures inside the body.
    • Computed tomography (CT) uses X-rays and a computer to make 3-D images inside the body.
    • Positron emission tomography (PET) uses a special tracer to make pictures inside the body. This test can show if abnormal immune cells are present.
  • Genetic testing. Some histiocytic disorders are caused by changes (mutations) in certain genes. Scientists can test those genes to find changes that might cause a histiocytic disorder.
  • Biopsy. Doctors often need to obtain a small tissue sample to make a diagnosis. Samples may be taken from the skin, bone, lymph nodes, liver, lung or bone marrow. 


Patrick Campbell, MD, PhD, with St. Jude patient Jamie

Your child’s histiocytosis treatment team will help you understand the specific treatment plan designed for your child. Sometimes, treatment is not needed right away. Some children with certain types of histiocytic disorders will get better without treatment.

When treatment is needed, there are several different options. Some types of treatment for children with histiocytosis include:

  • Steroids calm down the over-active immune cells and may slow their growth.
  • Surgery removes abnormal cells from an area of the body.
  • Chemotherapy (“chemo”) uses powerful medicines to kill over-active immune cells or stop them from growing (dividing) and making more cells. 
  • Targeted therapy uses medicines or other treatments that specifically target and attack over-active or abnormal immune cells. A therapy that acts on a specific process inside immune cells was recently approved by the FDA for patients with Erdheim Chester disease, a rare histiocytic disorder. This and related therapies are being tested in patients with other forms of histiocytosis.
  • Stem cell transplant replaces immune-forming cells in the bone marrow with cells from a healthy donor.
    • Some types of stem cell transplants may be called “bone marrow transplants” because the cells come from the donor’s bone marrow.

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