A histiocytosis diagnosis typically comes with many questions and concerns ranging from understanding the treatment process to the ins and outs of everyday life. Below are some of the questions frequently asked by our histiocytosis patients and their families. Additional questions should be directed to the patient’s case coordinator or social worker.
Histiocytosis is a rare blood disease caused by abnormal increase in the number of immune cells called histiocytes. These cells cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. In some cases, the disease is limited to one area of the body and spontaneously regresses and in other cases, histiocytosis spreads to many organs and can be chronic and debilitating.
Although treated at the Hyundai Cancer Institute at CHOC Children’s, histiocytosis is not technically a cancer. Histiocytosis is very similar to cancer, as it is primarily treated by oncologists with chemotherapy and/or steroids.
According to Histiocytosis Association of America, the majority of people diagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages.
Pathology results take at least three business days from the biopsy date. If pathology is difficult then it might be sent to another facility, which can take up to another week for their final diagnosis.
A bone marrow transplant is not the first line of therapy with histiocytosis. Extreme cases of histiocytosis may be treated with an allogenic bone marrow transplant.
Children on chemotherapy do not need to stay in the house. It is good for them to go outside and get fresh air. Just remember to use sunscreen and hats because chemotherapy can make the patient’s skin sensitive. It is also important for the child to wear a mask when in crowded public places or when coming to and from the clinic and hospital.
Patients on chemotherapy do not need to be on a strict diet; a normal, well-balanced diet is recommended. Patients should avoid eating rare foods like sushi and rare meats. Fruits and vegetables should be wash and caregivers should carefully watch expiration dates on food items.
There is no need to get rid of the family pet unless it is a reptile or a bird. Because reptiles and birds may carry salmonella, we recommend having another family member or friend take care of the pet while the patient is on chemotherapy. Children receiving chemotherapy should not clean up after or feed any family pet. We also do not recommend getting a new dog or pet while the patient is receiving treatment.
After treatment is completed, the patient will come to clinic every month for a doctor’s visit for the first year off therapy. Scans will be done every three months for the first year off therapy.