The first 60 days: Chronic myeloid leukaemia, chronic phase

Below, week by week, is what OnCo's record of Chronic myeloid leukaemia, chronic phase says about the first two months: the order is typical, the timing is yours to ask about. Chronic-phase chronic myeloid leukaemia is the disease that imatinib turned from fatal into manageable: a daily pill blocks the BCR::ABL1 protein that drives it. Blood tests track the leukaemia gene to a millionth, newer pills such as asciminib (ASC4FIRST) reach deeper responses faster, and patients with years of undetectable disease can try stopping. Sections appear only where the record has something to say. Orientation, not medical advice.

Weeks 1 to 2

What happens now

Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.

Newly diagnosed chronic phase NCCN Guidelines: Chronic Myeloid Leukemia
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.
Imatinib Dasatinib Nilotinib Bosutinib Asciminib A Study of Oral Asciminib Versus Other TKIs in Adult Patients With Newly Diagnosed Ph+ CML-CP 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)Molecular response (MMR, MR4, treatment-free remission)

Biomarkers your report may list

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

Ask which of these were tested and what the results were; see the report reader for what each value means.

Tests and imaging linked to this cancer

Cytogenetics and FISH

Weeks 1 to 3

Who is on your team

These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.

A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.

Weeks 2 to 6

Decisions coming up

Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.

1.Sustained deep molecular response NCCN Guidelines: Chronic Myeloid Leukemia
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)
2.Resistance or intolerance NCCN Guidelines: Chronic Myeloid Leukemia
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

Every visit

Questions to ask at each visit

Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.

Newly diagnosed

What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Newly diagnosed chronic phase, low ELTS risk, Newly diagnosed chronic phase, high ELTS risk, Chronic phase resistant or intolerant to first tyrosine kinase inhibitor.
Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.

Newly diagnosed chronic phase

For my situation (newly diagnosed chronic phase), which of the standard options do you recommend and why?Guideline options include: 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.
Am I a candidate for Imatinib, Dasatinib, Nilotinib or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
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?Trial populations differ from individual patients; ask how closely you match.

Resistance or intolerance

For my situation (resistance or intolerance), which of the standard options do you recommend and why?Guideline options include: 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.
Am I a candidate for Ponatinib, Asciminib, Olverembatinib or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
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?Trial populations differ from individual patients; ask how closely you match.

Sustained deep molecular response

For my situation (sustained deep molecular response), which of the standard options do you recommend and why?Guideline options include: 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.

Any stage

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?Trials are how the next standard of care is set; asking early keeps options open.
Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
I read that “The leukaemic stem cells that survive kinase inhibition and cause relapse after stopping”. How does that affect my plan?Open problems are where trials and second opinions matter most.
I read that “Cardiovascular toxicity over decades on second- and third-generation inhibitors”. How does that affect my plan?Open problems are where trials and second opinions matter most.

Weeks 3 to 8

Trials to ask about

Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.

From day one

Help that costs nothing

Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.

Any time

What to read next

Words this page and the cancer page use

Sokal and ELTS risk scores (chronic myeloid leukaemia): Sokal and ELTS are arithmetic from the first blood count: age, spleen size, platelets and blast percentage at diagnosis sort chronic myeloid leukaemia into low, intermediate and high risk, and high-risk patients are the ones more likely to be started on a second-generation drug rather than imatinib.
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'.
BCR::ABL1 kinase domain mutations (T315I and others): When a CML drug stops working, the leukaemia has usually changed the shape of the pocket the drug fits into; sequencing the BCR::ABL1 kinase domain names the mutation, and the name tells the doctor which drug still fits: most mutations respond to another second-generation drug, but T315I responds only to ponatinib or asciminib.
Philadelphia chromosome (Ph+, BCR::ABL1): A swapped piece between chromosomes 9 and 22 that fuses two genes into BCR::ABL1, a runaway kinase.
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.
Minimal / molecular residual disease (MRD): Cancer still present after treatment but too small to see on scans, detected by blood or marrow tests.

Every term links to the glossary.