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PubMed This is a summary of 19 peer-reviewed journal articles Updated
Hematology

Building Your Care Team: Preparing for the First Visit

At a Glance

Building an expert care team for Chronic Myeloid Leukemia (CML) requires finding a hematologic oncologist familiar with the latest research. For your first visit, bring your diagnostic lab reports and ask about risk scoring, modern treatments, and financial navigation for your medications.

Because Chronic Myeloid Leukemia (CML) is a rare disease with highly specialized treatment, building the right care team is one of the most important steps you can take. You are looking for more than just an oncologist; you are looking for a hematologic oncologist—a specialist in blood cancers—who has deep, up-to-date expertise in CML management [1][2].

Organizing Your Medical “Artifacts”

Your first visit will be more productive if you arrive with your diagnostic records organized. These “artifacts” provide the baseline for your entire treatment journey. Ensure you have copies of:

  • Complete Blood Count (CBC): This shows your white blood cell, red blood cell, and platelet levels [3].
  • Bone Marrow Biopsy and Aspirate Report: This is critical for determining your “blast percentage” and confirming the phase of your disease [4][5].
  • Cytogenetics/Karyotype Report: This confirms the presence of the Philadelphia chromosome (t(9;22)) [6][7].
  • RT-qPCR Results: This measures your initial BCR-ABL1 levels, which serves as your “starting line” for treatment [8][9].

Identifying an Expert

CML care is changing rapidly. A true specialist will be familiar with the latest research and scoring systems used to personalize your care. Look for these indicators of expertise:

  • Risk Stratification: An expert will not just say you have CML; they will use a formal scoring system like the ELTS (EUTOS Long-Term Survival) score to predict how your disease might behave and to choose the right medication [10][11][12]. For more on this, see Predicting Your Progress.
  • Familiarity with New Therapies: They should be able to discuss the latest clinical trial data, such as the ASC4FIRST trial, which recently established asciminib as a highly effective frontline option [13][14].
  • Goal-Oriented Care: A specialist should discuss Treatment-Free Remission (TFR) early on. This is the goal of reaching such a deep molecular response that you may eventually be able to stop taking medication safely [15][16].

The Monitoring Schedule

Your care team should emphasize that CML management is a marathon, not a sprint. This requires frequent “check-ins” via blood tests. Current guidelines (NCCN and ELN) typically recommend:

  • Molecular Monitoring (RT-qPCR): Every 3 months until you reach a Major Molecular Response (MMR), then potentially every 3 to 6 months once stable [17][18][19].
  • Standardized Labs: It is essential that your lab reports results on the International Scale (IS) so they can be compared accurately over time [9][8].

Navigating Financial Realities

The financial reality of taking a highly specialized daily pill indefinitely can be a significant source of anxiety, sometimes referred to as “financial toxicity.” Fortunately, there is substantial help available. When building your care team, ask to speak with an oncology social worker or financial navigator. They can assist you with:

  • Specialty Pharmacies: TKIs are often dispensed through specialty pharmacies rather than local drugstores, and navigators can help coordinate this.
  • Copay Assistance Programs: Most TKI manufacturers offer robust copay assistance cards that can reduce your out-of-pocket costs to a very low monthly amount.
  • Grants and Foundations: Organizations like the Leukemia & Lymphoma Society (LLS) often have grants available to help cover insurance premiums or travel costs.

If your local oncologist does not see many CML cases, consider seeking a second opinion at an NCI-Designated Cancer Center or an academic research institution. Many patients see a local oncologist for daily care while consulting with a CML specialist once or twice a year to ensure their treatment plan remains on the cutting edge.

Common questions in this guide

What kind of doctor treats Chronic Myeloid Leukemia?
CML is a highly specialized disease, so you should seek a hematologic oncologist. This is a doctor who specializes specifically in blood cancers and will be most familiar with current CML guidelines and treatments.
What medical records do I need for my first CML appointment?
You should bring your complete blood count (CBC), bone marrow biopsy and aspirate reports, cytogenetics or karyotype report, and baseline RT-qPCR results. These establish the starting line for your treatment journey.
How often will I need blood tests for CML monitoring?
Current guidelines recommend molecular monitoring with an RT-qPCR test every three months until you reach a Major Molecular Response. Once your levels are stable, testing may be reduced to every three to six months.
What is Treatment-Free Remission (TFR) in CML?
Treatment-Free Remission is the goal of achieving such a deep molecular response to therapy that you may eventually be able to safely stop taking your medication. Discussing this goal early helps guide your treatment plan.
How can I manage the high cost of CML medications?
Your care team can connect you with an oncology social worker or financial navigator. They can help you access copay assistance programs from drug manufacturers, specialty pharmacies, and grants from patient advocacy organizations.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with CML do you currently treat, and do you follow the NCCN or ELN guidelines for monitoring?
  2. 2.Will you be using the ELTS (EUTOS Long-Term Survival) score or the Sokal score to determine my risk category?
  3. 3.Which laboratory will be processing my RT-qPCR tests, and can you confirm they report results on the International Scale (IS)?
  4. 4.Are you familiar with the recent ASC4FIRST trial data, and is frontline treatment with asciminib an option for me?
  5. 5.Can you connect me with a financial navigator to help me understand copay assistance programs for my TKI?
  6. 6.What is your approach to 'Treatment-Free Remission' (TFR)—is this a goal you work toward with your patients?

Questions For You

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References

References (19)
  1. 1

    How I Evaluate and Treat Resistance and Relapse in CML.

    Soverini S, Castagnetti F

    Blood 2025; doi:10.1182/blood.2024026511.

    PMID: 40373278
  2. 2

    How I Manage Patients with Chronic Myeloid Leukemia (CML): Perspectives from Clinical Practice.

    Guru Murthy GS

    Blood and lymphatic cancer : targets and therapy 2022; (12()):1-6 doi:10.2147/BLCTT.S219160.

    PMID: 35340664
  3. 3

    Bone marrow core biopsy in 508 consecutive patients with chronic myeloid leukemia: Assessment of potential value.

    Hidalgo-Lόpez JE, Kanagal-Shamanna R, Quesada AE, et al.

    Cancer 2018; (124(19)):3849-3855 doi:10.1002/cncr.31663.

    PMID: 30321462
  4. 4

    Chronic Myeloid Leukemia: Atypical Presentation and Diagnostic Pitfall in the Workup of Isolated Thrombocytosis.

    Findakly D, Arslan W

    Cureus 2020; (12(6)):e8498 doi:10.7759/cureus.8498.

    PMID: 32528789
  5. 5

    Genomic Copy Number Variants in CML Patients With the Philadelphia Chromosome (Ph+): An Update.

    Zhang H, Liu M, Wang X, et al.

    Frontiers in genetics 2021; (12()):697009 doi:10.3389/fgene.2021.697009.

    PMID: 34447409
  6. 6

    Exploration of treatment-free remission in CML, based on molecular monitoring.

    Zhang Z, Zhou X, Zhou X, et al.

    Cancer medicine 2024; (13(1)):e6849 doi:10.1002/cam4.6849.

    PMID: 38133525
  7. 7

    Frequency of rare BCR-ABL1 fusion transcripts in chronic myeloid leukemia patients.

    Arun AK, Senthamizhselvi A, Mani S, et al.

    International journal of laboratory hematology 2017; (39(3)):235-242 doi:10.1111/ijlh.12616.

    PMID: 28035733
  8. 8

    BCR-ABL1 p210 screening for chronic myeloid leukemia in patients with peripheral blood cytoses.

    Fenu E, O'Neill SS, Insuasti-Beltran G

    International journal of laboratory hematology 2021; (43(6)):1458-1464 doi:10.1111/ijlh.13635.

    PMID: 34185393
  9. 9

    Assessment of individual molecular response in chronic myeloid leukemia patients with atypical BCR-ABL1 fusion transcripts: recommendations by the EUTOS cooperative network.

    Schäfer V, White HE, Gerrard G, et al.

    Journal of cancer research and clinical oncology 2021; (147(10)):3081-3089 doi:10.1007/s00432-021-03569-8.

    PMID: 33677711
  10. 10

    The EUTOS long-term survival score predicts disease-specific mortality and molecular responses among patients with chronic myeloid leukemia in a practice-based cohort.

    Sato E, Iriyama N, Tokuhira M, et al.

    Cancer medicine 2020; (9(23)):8931-8939 doi:10.1002/cam4.3516.

    PMID: 33037866
  11. 11

    Validation of the EUTOS Long-Term Survival Score in Chinese Chronic Myeloid Leukemia Patients Treated with Imatinib: A Multicenter Real-World Study.

    Yang X, Bai Y, Shi M, et al.

    Cancer management and research 2020; (12()):1293-1301 doi:10.2147/CMAR.S237467.

    PMID: 32110103
  12. 12

    Prognostic Factors for Overall Survival In Chronic Myeloid Leukemia Patients: A Multicentric Cohort Study by the Italian CML GIMEMA Network.

    Specchia G, Pregno P, Breccia M, et al.

    Frontiers in oncology 2021; (11()):739171 doi:10.3389/fonc.2021.739171.

    PMID: 34513714
  13. 13

    Asciminib: the next-generation bullet for first-line treatment of chronic myeloid leukemia.

    Yoshida C, Takaku T

    Med (New York, N.Y.) 2024; (5(8)):856-858 doi:10.1016/j.medj.2024.07.001.

    PMID: 39127034
  14. 14

    Different In Vitro Models of Chronic Myeloid Leukemia Show Different Characteristics: Biological Replicates Are Not Biologically Equivalent.

    Cavalleri A, Xhahysa B, Mutti S, et al.

    Cell biology international 2025; (49(5)):570-586 doi:10.1002/cbin.70007.

    PMID: 40022557
  15. 15

    TKI discontinuation in CML: how do we make more patients eligible? How do we increase the chances of a successful treatment-free remission?

    Hochhaus A, Ernst T

    Hematology. American Society of Hematology. Education Program 2021; (2021(1)):106-112 doi:10.1182/hematology.2021000238.

    PMID: 34889388
  16. 16

    Digital PCR (dPCR) is able to anticipate the achievement of stable deep molecular response in adult chronic myeloid leukemia patients: results of the DEMONSTRATE study.

    Bernardi S, Cavalleri A, Mutti S, et al.

    Annals of hematology 2025; (104(1)):207-217 doi:10.1007/s00277-024-06100-4.

    PMID: 39611878
  17. 17

    Tyrosine Kinase Inhibitor Treatment for Newly Diagnosed Chronic Myeloid Leukemia.

    Radich JP, Mauro MJ

    Hematology/oncology clinics of North America 2017; (31(4)):577-587 doi:10.1016/j.hoc.2017.04.006.

    PMID: 28673389
  18. 18

    Are we ready to use precision medicine in chronic myeloid leukemia practice?

    Kim DDH

    Haematologica 2019; (104(12)):2327-2329 doi:10.3324/haematol.2019.231753.

    PMID: 31787613
  19. 19

    Highly sensitive droplet digital polymerase chain reaction for BCR::ABL1 messenger RNA identifies patients with chronic myeloid leukaemia with a low probability of achieving treatment-free remission.

    Lu L, Kok CH, Dang P, et al.

    British journal of haematology 2022; (198(3)):600-603 doi:10.1111/bjh.18277.

    PMID: 35620965

This page provides educational information on preparing for a CML oncology appointment. It is not intended to replace personalized medical advice from your hematologic oncologist.

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