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Living with cancer· Appointment prep

Appointment sheet: Single-system Langerhans cell histiocytosis (bone, skin or one other organ)

One page to bring and write on: your details, the questions for Single-system Langerhans cell histiocytosis (bone, skin or one other organ) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Single-system Langerhans cell histiocytosis (bone, skin or one other organ)

Prepared with OnCo (onco.cc/prep/lch-single-system/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

17 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example CD1a and langerinpositive histiocytes on biopsy, BRAF V600E in tissueand cell-free DNA, MAP2K1 and other MAPK alterations, Skeletal survey or whole-body MRI or PET for occult lesions, Pituitary MRI and water balance for special-site disease), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Unifocal bone disease
  1. 6.For my situation (unifocal bone disease), which of the standard options do you recommend and why?
Multifocal bone or special-site disease
  1. 7.For my situation (multifocal bone or special-site disease), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Vinblastine, and what side effects should I expect?
  3. 9.How do the results of LCH-III apply to someone like me?
Skin-only disease
  1. 10.For my situation (skin-only disease), which of the standard options do you recommend and why?
Adult single-system or refractory disease
  1. 11.For my situation (adult single-system or refractory disease), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Cladribine, Vemurafenib, Dabrafenib + trametinib or related drugs, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Dabrafenib + trametinib, Vemurafenib, Cobimetinib?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “Which infants with skin-only disease will progress cannot be predicted”. How does that affect my plan?
  5. 17.I read that “Whether treating special-site lesions truly prevents neurodegeneration is inferred rather than proven”. How does that affect my plan?

The words I may hear

  • BRAF V600E mutation: A single spelling change in the BRAF gene that jams a growth switch permanently on.
  • Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.

Tests and results to bring

Diagnosis and staging: Biopsy with immunohistochemistry and BRAF testing; skeletal survey or whole-body imaging, blood count, liver tests and abdominal ultrasound to exclude multisystem disease.

Biomarker results to ask for: CD1a and langerin (CD207) positive histiocytes on biopsy, BRAF V600E in tissue (present in over half) and cell-free DNA, MAP2K1 and other MAPK alterations, Skeletal survey or whole-body MRI or PET for occult lesions, Pituitary MRI and water balance for special-site disease, Chest CT and pulmonary function in adult pulmonary disease.

Scans and tests linked to this cancer: Active surveillance, FDG PET, Histopathology & immunohistochemistry, MRI, Ultrasound.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Unifocal bone disease: Biopsy with curettage, with or without intralesional methylprednisolone; observation of healing; indomethacin for pain. (Active surveillance)
  • Multifocal bone or special-site disease: Vinblastine and prednisone for twelve months (LCH-III schedule) to reduce reactivation and central nervous system risk. (Vinblastine, LCH-III)
  • Skin-only disease: Observation or topical corticosteroids; systemic therapy only for extensive symptomatic disease; regular review for progression to multisystem disease. (Active surveillance)
  • Adult single-system or refractory disease: Cytarabine or cladribine; smoking cessation for pulmonary disease; BRAF or MEK inhibitors (vemurafenib, dabrafenib-trametinib, cobimetinib) for refractory disease. (Cladribine, Vemurafenib, Dabrafenib + trametinib, Cobimetinib, Small-molecule kinase inhibitors)

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call