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Living with cancer· Appointment prep

Appointment sheet: Tenosynovial giant cell tumour (TGCT)

One page to bring and write on: your details, the questions for Tenosynovial giant cell tumour (TGCT) 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

Tenosynovial giant cell tumour (TGCT)

Prepared with OnCo (onco.cc/prep/tenosynovial-giant-cell-tumour/). 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

14 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 CSF1 rearrangementin neoplastic cells, CSF1R-positive macrophage-rich infiltrate, MRI pattern, Liver function tests before and during pexidartinib), 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?
Localised TGCT
  1. 5.For my situation (localised tgct), which of the standard options do you recommend and why?
Diffuse TGCT, resectable
  1. 6.For my situation (diffuse tgct, resectable), which of the standard options do you recommend and why?
Diffuse TGCT where surgery would cause severe morbidity or after recurrence
  1. 7.For my situation (diffuse tgct where surgery would cause severe morbidity or after recurrence), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Vimseltinib, Pexidartinib, Imatinib or related drugs, and what side effects should I expect?
  3. 9.How do the results of MOTION apply to someone like me?
Any stage
  1. 10.Are there clinical trials I could join, for example of Vimseltinib, MOTION, Emactuzumab, Pimicotinib?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “Duration of CSF1R therapy and rebound after stopping: extension cohorts and intermittent schedules are being studied”. How does that affect my plan?
  5. 14.I read that “Hepatotoxicity of pexidartinib: newer agents (vimseltinib, emactuzumab) are designed to avoid it”. How does that affect my plan?

The words I may hear

  • Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.

Tests and results to bring

Biomarker results to ask for: CSF1 rearrangement (COL6A3-CSF1) in neoplastic cells, CSF1R-positive macrophage-rich infiltrate, MRI pattern (haemosiderin blooming on gradient echo), Liver function tests before and during pexidartinib (REMS).

Scans and tests linked to this cancer: MRI.

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