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Living with cancer· Appointment prep

Appointment sheet: ROS1-positive non-small-cell lung cancer

One page to bring and write on: your details, the questions for ROS1-positive non-small-cell lung cancer 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

ROS1-positive non-small-cell lung cancer

Prepared with OnCo (onco.cc/prep/ros1-positive-nsclc/). 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

16 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 ROS1 fusion by RNA sequencing, fluorescence in situ hybridisation or immunohistochemistry with confirmation, ROS1 resistance mutations at progression, Brain MRI at diagnosis and during follow-up, Bypass alterationsat progression), 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?
Advanced, first line
  1. 5.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Repotrectinib, Taletrectinib, Entrectinib or related drugs, and what side effects should I expect?
  3. 7.How do the results of A Study of Repotrectinib (TPX-0005) in Patients With Advanced Solid Tumors Harboring ALK, ROS1, or NTRK1-3 Rearrangements and A Study of AB-106 in Subjects With Advanced NSCLC Harboring ROS1 Fusion Gene apply to someone like me?
Advanced, after crizotinib or entrectinib
  1. 8.For my situation (advanced, after crizotinib or entrectinib), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Repotrectinib, Taletrectinib, Zidesamtinib or related drugs, and what side effects should I expect?
Brain metastases
  1. 10.For my situation (brain metastases), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Repotrectinib, Entrectinib, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Zidesamtinib, Taletrectinib, A Study of AB-106 in Subjects With Advanced NSCLC Harboring ROS1 Fusion Gene?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “No randomised trial compares the ROS1 inhibitors; choice rests on single-arm response rates and side-effect profiles”. How does that affect my plan?
  5. 16.I read that “Dizziness, weight gain and paraesthesia from TRK inhibition limit the current brain-penetrant drugs”. How does that affect my plan?

The words I may hear

  • On-target resistance mutations (gatekeeper, solvent-front, compound): When a cancer becomes resistant to a targeted pill, it often does so by changing the exact spot where the drug binds: a 'gatekeeper' or 'solvent-front' mutation.
  • Oncogene addiction: When a cancer depends so completely on one mutated gene that blocking it collapses the tumour.
  • Tyrosine kinase inhibitor (TKI): Pills that block the on-switch enzyme (a kinase) that a particular cancer depends on: imatinib for CML, osimertinib for EGFR lung cancer, ibrutinib for CLL.
  • Gene fusion: A gene fusion is two genes broken and joined together, creating a hybrid protein that can drive cancer.
  • Brain metastases (intracranial disease): Tumour deposits that have travelled to the brain from a cancer elsewhere, ten times more common than cancers that start in the brain, mostly from lung, breast, melanoma and kidney cancer.

Tests and results to bring

Biomarker results to ask for: ROS1 fusion by RNA sequencing, fluorescence in situ hybridisation or immunohistochemistry with confirmation, ROS1 resistance mutations at progression (G2032R, D2033N, L2026M), Brain MRI at diagnosis and during follow-up, Bypass alterations (MET amplification, KRAS) at progression.

Scans and tests linked to this cancer: Comprehensive genomic profiling.

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