Table 1

General clinical approach to LCH

Clinical approach to LCH
Initial consideration of diagnosis of LCH 
 • Physical examination, history, or other clinical or laboratory tests suggest
possibility of LCH 
Initial evaluation 
 • Assess need for biopsy, optimal site for biopsy, and possible alternative
diagnoses (eg, lymphoma, infection) 
   • Complete blood count, chemistries, liver function, coagulation studies,
sedimentation rate, immunoglobulins, LDH, uric acid, ferritin 
   • Skeletal survey with 2 views of chest and 4 views of skull 
Suspicion for LCH 
 • PET/CT scan (recommended) 
 • Diagnostic biopsy: open biopsy with curettage is optimal (complete excision is
NOT required) 
   • Intralesion corticosteroid injection if single bone lesion is suspected 
Pretherapy baseline studies and special circumstances* 
 Bone marrow biopsy and aspirate 
   • All patients under 2 y 
   • Any patient with cytopenias 
 CT skull/maxillofacial scan 
  • CNS-risk lesions 
   • Baseline neurocognitive evaluation 
   • Baseline MRI brain 
   • Baseline hearing evaluation if auditory canal or temporal bones are involved 
 MRI brain 
  • History concerning for DI or pituitary dysfunction 
   • Urine-specific gravity and urine and serum osmolality/water deprivation test 
   • Diagnostic LP (cytology and AFP/β-HCG for isolated pituitary mass) 
   • Endocrine evaluation (as directed by history) 
 MRI spine 
   • Concern for spinal cord involvement 
 CT chest scan 
   • Concern for pulmonary involvement 
 Abdominal imaging (U/S or MRI) 
   • Elevated transaminases, direct bilirubin or decreased albumin 
 Lower GI endoscopy 
   • Decreased albumin or history of malabsorption 
 Experimental 
   • BRAF/MAP2K1 genotyping of tumor (sequencing methods may yield false
negative due to relatively low “LCH” cell infiltrate in lesions) 
   • BRAFV600E qPCR of tumor. If mutation detected or no tumor tissue
available, BRAFV600E qPCR of peripheral blood (and bone marrow, if
applicable) 
Monitor response to therapy and toxicity 
 Single lesion (not CNS-risk) or skin-limited disease: 
   • Chemotherapy is not necessary in many cases, and disease may be
monitored by focused imaging and/or clinical examination 
 For patients requiring chemotherapy: 
  Every cycle: 
   • Complete blood count 
   • Liver function 
   • Sedimentation rate (if initially abnormal) 
   • Chemistries/osmolality (if initially abnormal) 
  After 6-8 wk (depending on therapy/protocol): 
   • PET/CT scan and/or specific imaging from initial staging 
   • Bone marrow biopsy/aspirate (if initially positive) 
   • Experimental: circulating BRAF-V600E in blood and bone marrow aspirate
(if initially positive) 
  Clinical concern for progression or relapse: 
   • Repeat 6- to 8-wk evaluations 
  End of therapy: 
   • Repeat 6- to 8-wk evaluations 
    Brain MRI for patient with CNS-risk lesions 
Off-therapy management 
 3 mo: 
   • PET/CT scan or focused imaging of original site of disease at 3 mo off-therapy 
   • Office visit every 3 mo through 1 y 
     • Focused imaging for clinical concerns 
 1 y: 
   • Comprehensive clinical evaluation every 6 mo through 3 y off therapy, then
annual 
Clinical approach to LCH
Initial consideration of diagnosis of LCH 
 • Physical examination, history, or other clinical or laboratory tests suggest
possibility of LCH 
Initial evaluation 
 • Assess need for biopsy, optimal site for biopsy, and possible alternative
diagnoses (eg, lymphoma, infection) 
   • Complete blood count, chemistries, liver function, coagulation studies,
sedimentation rate, immunoglobulins, LDH, uric acid, ferritin 
   • Skeletal survey with 2 views of chest and 4 views of skull 
Suspicion for LCH 
 • PET/CT scan (recommended) 
 • Diagnostic biopsy: open biopsy with curettage is optimal (complete excision is
NOT required) 
   • Intralesion corticosteroid injection if single bone lesion is suspected 
Pretherapy baseline studies and special circumstances* 
 Bone marrow biopsy and aspirate 
   • All patients under 2 y 
   • Any patient with cytopenias 
 CT skull/maxillofacial scan 
  • CNS-risk lesions 
   • Baseline neurocognitive evaluation 
   • Baseline MRI brain 
   • Baseline hearing evaluation if auditory canal or temporal bones are involved 
 MRI brain 
  • History concerning for DI or pituitary dysfunction 
   • Urine-specific gravity and urine and serum osmolality/water deprivation test 
   • Diagnostic LP (cytology and AFP/β-HCG for isolated pituitary mass) 
   • Endocrine evaluation (as directed by history) 
 MRI spine 
   • Concern for spinal cord involvement 
 CT chest scan 
   • Concern for pulmonary involvement 
 Abdominal imaging (U/S or MRI) 
   • Elevated transaminases, direct bilirubin or decreased albumin 
 Lower GI endoscopy 
   • Decreased albumin or history of malabsorption 
 Experimental 
   • BRAF/MAP2K1 genotyping of tumor (sequencing methods may yield false
negative due to relatively low “LCH” cell infiltrate in lesions) 
   • BRAFV600E qPCR of tumor. If mutation detected or no tumor tissue
available, BRAFV600E qPCR of peripheral blood (and bone marrow, if
applicable) 
Monitor response to therapy and toxicity 
 Single lesion (not CNS-risk) or skin-limited disease: 
   • Chemotherapy is not necessary in many cases, and disease may be
monitored by focused imaging and/or clinical examination 
 For patients requiring chemotherapy: 
  Every cycle: 
   • Complete blood count 
   • Liver function 
   • Sedimentation rate (if initially abnormal) 
   • Chemistries/osmolality (if initially abnormal) 
  After 6-8 wk (depending on therapy/protocol): 
   • PET/CT scan and/or specific imaging from initial staging 
   • Bone marrow biopsy/aspirate (if initially positive) 
   • Experimental: circulating BRAF-V600E in blood and bone marrow aspirate
(if initially positive) 
  Clinical concern for progression or relapse: 
   • Repeat 6- to 8-wk evaluations 
  End of therapy: 
   • Repeat 6- to 8-wk evaluations 
    Brain MRI for patient with CNS-risk lesions 
Off-therapy management 
 3 mo: 
   • PET/CT scan or focused imaging of original site of disease at 3 mo off-therapy 
   • Office visit every 3 mo through 1 y 
     • Focused imaging for clinical concerns 
 1 y: 
   • Comprehensive clinical evaluation every 6 mo through 3 y off therapy, then
annual 

AFP, alpha-fetoprotein; β-HCG, beta-subunit of human chorionic gonadotropin; GI, gastrointestinal; LP, lumbar puncture; U/S, ultrasound.

*

For patients enrolled on study (eg, LCH-IV), follow protocol-specific requirements.

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