Appointment sheet
Chronic myeloid leukaemia, chronic phase
Prepared with OnCo (onco.cc/prep/cml-chronic-phase/). 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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
16 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example BCR::ABL1 transcript by quantitative PCR on the International Scale, ELTS and Sokal risk scores, Karyotype and additional chromosomal abnormalities, BCR::ABL1 kinase domain mutations, Depth of molecular responsefor stopping), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Newly diagnosed chronic phase
- 5.For my situation (newly diagnosed chronic phase), which of the standard options do you recommend and why?
- 6.Am I a candidate for Imatinib, Dasatinib, Nilotinib or related drugs, and what side effects should I expect?
- 7.How do the results of A Study of Oral Asciminib Versus Other TKIs in Adult Patients With Newly Diagnosed Ph+ CML-CP and A Study to Investigate Tolerability and Efficacy of Asciminib (Oral) Versus Nilotinib (Oral) in Adult Participants (≥18 Years of Age) With Newly Diagnosed Philadelphia Chromosome Positive Chronic Myelogenous Leukemia in Chronic Phase (Ph+ CML-CP) apply to someone like me?
Resistance or intolerance
- 8.For my situation (resistance or intolerance), which of the standard options do you recommend and why?
- 9.Am I a candidate for Ponatinib, Asciminib, Olverembatinib or related drugs, and what side effects should I expect?
- 10.How do the results of Study of Olverembatinib (HQP1351) in Patients With CML-CP and A Phase 3 Study for the Efficacy and Safety of Radotinib in CP-CML Patients With Failure or Intolerance to Previous TKIs apply to someone like me?
Sustained deep molecular response
- 11.For my situation (sustained deep molecular response), which of the standard options do you recommend and why?
Any stage
- 12.Are there clinical trials I could join, for example of Asciminib, Olverembatinib, Radotinib, A Study of Oral Asciminib Versus Other TKIs in Adult Patients With Newly Diagnosed Ph+ CML-CP?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “The leukaemic stem cells that survive kinase inhibition and cause relapse after stopping”. How does that affect my plan?
- 16.I read that “Cardiovascular toxicity over decades on second- and third-generation inhibitors”. How does that affect my plan?
The words I may hear
- 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.
- Molecular response (MMR, MR4, treatment-free remission): In chronic myeloid leukaemia, how far the leukaemia gene signal in the blood has fallen, measured in logs: a 1,000-fold drop is a major molecular response, a 10,000-fold drop (MR4) is 'deep'.
- Philadelphia chromosome (Ph+, BCR::ABL1): A swapped piece between chromosomes 9 and 22 that fuses two genes into BCR::ABL1, a runaway kinase.
- Minimal / molecular residual disease (MRD): Cancer still present after treatment but too small to see on scans, detected by blood or marrow tests.
Tests and results to bring
Newly diagnosed chronic phase: Imatinib 400 mg daily, a second-generation inhibitor (dasatinib, nilotinib, bosutinib) chosen by comorbidity and treatment goal, or asciminib (ASC4FIRST); PCR at 3, 6 and 12 months against ELN milestones.
Biomarker results to ask for: BCR::ABL1 transcript by quantitative PCR on the International Scale, ELTS and Sokal risk scores, Karyotype and additional chromosomal abnormalities, BCR::ABL1 kinase domain mutations (T315I and others), Depth of molecular response (MR4, MR4.5) for stopping, Cardiovascular risk profile before nilotinib or ponatinib.
Scans and tests linked to this cancer: Cytogenetics and FISH.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Sustained deep molecular response: Attempt treatment-free remission after at least three to five years of therapy and two years of MR4 or better, with monthly PCR for six months; restart on loss of major molecular response. (Minimal / molecular residual disease (MRD), Molecular response (MMR, MR4, treatment-free remission), Residual disease kinetics (BCR-ABL halving and ctDNA slopes))
- Resistance or intolerance: Switch inhibitor guided by kinase domain mutation testing; ponatinib or asciminib for T315I; radotinib or olverembatinib where approved; allogeneic transplant after failure of two or more inhibitors. (Ponatinib, Asciminib, Olverembatinib, Radotinib, Study of Olverembatinib (HQP1351) in Patients With CML-CP, A Phase 3 Study for the Efficacy and Safety of Radotinib in CP-CML Patients With Failure or Intolerance to Previous TKIs, Asciminib Monotherapy, With Dose Escalation, for 2nd and 1st Line Chronic Myelogenous Leukemia, Allogeneic stem cell transplantation)
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 browserWhat I was told
Agreed next steps, dates and who to call