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Living with cancer· Appointment prep

Appointment sheet: Multisystem Langerhans cell histiocytosis (with or without risk-organ involvement)

One page to bring and write on: your details, the questions for Multisystem Langerhans cell histiocytosis (with or without risk-organ involvement) 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

Multisystem Langerhans cell histiocytosis (with or without risk-organ involvement)

Prepared with OnCo (onco.cc/prep/lch-multisystem/). 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 Risk-organ involvement at diagnosis, Response at week six, BRAF V600E in tissue and cell-free DNA, MAP2K1 and other MAPK alterations, Pituitary MRI, water deprivation testing and anterior pituitary hormones), 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?
First line
  1. 6.For my situation (first line), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Vinblastine, and what side effects should I expect?
  3. 8.How do the results of LCH-III apply to someone like me?
Non-response at week six or risk-organ progression
  1. 9.For my situation (non-response at week six or risk-organ progression), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Cladribine, Vemurafenib, Dabrafenib + trametinib, and what side effects should I expect?
Reactivation
  1. 11.For my situation (reactivation), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Vinblastine, Cladribine, Vemurafenib, and what side effects should I expect?
Long-term follow-up
  1. 13.For my situation (long-term follow-up), which of the standard options do you recommend and why?
Any stage
  1. 14.Are there clinical trials I could join, for example of Dabrafenib + trametinib, Vemurafenib, LCH-III, Cobimetinib?
  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 “Targeted therapy controls but does not cure; how to stop it safely is unknown”. How does that affect my plan?
  5. 18.I read that “Neurodegenerative disease appears years later and has no proven treatment”. How does that affect my plan?

The words I may hear

  • Cytopenias and myelosuppression: The umbrella term for low blood counts of any kind (white cells, red cells, platelets) when treatment suppresses the bone marrow.
  • 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 BRAF testing; blood count, liver tests, coagulation, abdominal ultrasound, skeletal survey or whole-body MRI, pituitary assessment.

Biomarker results to ask for: Risk-organ involvement at diagnosis (liver, spleen, cytopenias), Response at week six (LCH-III), BRAF V600E in tissue and cell-free DNA (burden, relapse), MAP2K1 and other MAPK alterations, Pituitary MRI, water deprivation testing and anterior pituitary hormones, Brain MRI for neurodegenerative change; liver imaging for sclerosing cholangitis.

Scans and tests linked to this cancer: Histopathology & immunohistochemistry, Liquid biopsy (ctDNA), 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

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