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Living with cancer· Appointment prep

Appointment sheet: Langerhans cell histiocytosis (LCH)

One page to bring and write on: your details, the questions for Langerhans cell histiocytosis (LCH) 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

Langerhans cell histiocytosis (LCH)

Prepared with OnCo (onco.cc/prep/langerhans-cell-histiocytosis/). 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

18 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 BRAF V600E in lesion tissue and cell-free DNA, MAP2K1 and other MAPK alterations, Risk-organ involvement at diagnosis, Response at week 6, Pituitary MRI and posterior pituitary function), 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?
Single-system bone or skin
  1. 5.For my situation (single-system bone or skin), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Vinblastine, and what side effects should I expect?
Multisystem LCH (first line)
  1. 7.For my situation (multisystem lch (first line)), 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?
Refractory risk-organ disease or reactivation
  1. 10.For my situation (refractory risk-organ disease or reactivation), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Cladribine, Vemurafenib, Dabrafenib + trametinib, and what side effects should I expect?
Neurodegenerative LCH
  1. 12.For my situation (neurodegenerative lch), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Dabrafenib + trametinib, and what side effects should I expect?
Any stage
  1. 14.Are there clinical trials I could join, for example of Dabrafenib + trametinib, Vemurafenib, LCH-III?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “How long to give BRAF or MEK inhibitors and how to stop them without reactivation; combination with chemotherapy to allow cessation is being tested in the Histiocyte Society and NACHO networks”. How does that affect my plan?
  5. 18.I read that “Preventing and treating neurodegenerative LCH; MRI surveillance and early MAPK inhibition are the current approach”. How does that affect my plan?

The words I may hear

  • 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

Biomarker results to ask for: BRAF V600E in lesion tissue and cell-free DNA (disease burden and monitoring), MAP2K1 and other MAPK alterations, Risk-organ involvement at diagnosis, Response at week 6 (predicts outcome in LCH-III), Pituitary MRI and posterior pituitary function, Brain MRI for neurodegenerative change.

Scans and tests linked to this cancer: Active surveillance, Liquid biopsy (ctDNA), MRI.

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

The treatments I may be offered

  • Single-system bone or skin: Biopsy or curettage with observation; intralesional steroid, topical therapy or indomethacin for symptomatic lesions; systemic therapy for multifocal bone or CNS-risk lesions. (Active surveillance, Vinblastine)
  • Multisystem LCH (first line): Vinblastine and prednisone for 12 months (LCH-III), with response assessment at 6 weeks; LCH-IV tests further tailoring of duration and intensity. (Vinblastine, LCH-III)
  • Neurodegenerative LCH: MAPK-pathway inhibition (BRAF or MEK inhibitor) with neurological monitoring; early MRI detection in children with pituitary or craniofacial disease. (Dabrafenib + trametinib, MRI)
  • Refractory risk-organ disease or reactivation: Cladribine plus cytarabine or clofarabine salvage; BRAF inhibitor (vemurafenib or dabrafenib, with trametinib) for BRAF V600E, MEK inhibitor for MAP2K1-mutant disease. (Cladribine, Vemurafenib, Dabrafenib + trametinib)

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