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Living with cancer· Appointment prep

Appointment sheet: Chronic myelomonocytic leukaemia and MDS/MPN overlap neoplasms

One page to bring and write on: your details, the questions for Chronic myelomonocytic leukaemia and MDS/MPN overlap neoplasms 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

Chronic myelomonocytic leukaemia and MDS/MPN overlap neoplasms

Prepared with OnCo (onco.cc/prep/cmml/). 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

17 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 Monocyte count and percentage; flow cytometric monocyte subset partitioning, Bone marrow blasts and dysplasia, Cytogenetics, complex), NGS: TET2, SRSF2, ASXL1, RUNX1, SETBP1, NRAS, KRAS, CBL, JAK2, SF3B1; exclusion of BCR-ABL1 and PDGFRA/B rearrangements, CPSS and CPSS-Mol risk score), 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?
Higher-risk CMML, fit with a donor
  1. 5.For my situation (higher-risk cmml, fit with a donor), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Azacitidine, and what side effects should I expect?
Higher-risk or symptomatic CMML, not transplant candidate
  1. 7.For my situation (higher-risk or symptomatic cmml, not transplant candidate), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Azacitidine, Decitabine + cedazuridine (oral), and what side effects should I expect?
Proliferative CMML with symptomatic leucocytosis or splenomegaly
  1. 9.For my situation (proliferative cmml with symptomatic leucocytosis or splenomegaly), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Hydroxyurea (hydroxycarbamide), Ruxolitinib, and what side effects should I expect?
Juvenile myelomonocytic leukaemia
  1. 11.For my situation (juvenile myelomonocytic leukaemia), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Azacitidine, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Ruxolitinib, Venetoclax, Azacitidine, Allogeneic stem cell transplantation?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “No drug alters the disease course; RAS-pathway inhibitors, GM-CSF antibodies and venetoclax combinations are in early trials”. How does that affect my plan?
  5. 17.I read that “Transformation to AML in a substantial minority; sequential mutation tracking to intervene earlier is being studied”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: Monocyte count and percentage; flow cytometric monocyte subset partitioning (classical monocytes above 94 percent), Bone marrow blasts and dysplasia, Cytogenetics (trisomy 8, -7/del(7q), complex), NGS: TET2, SRSF2, ASXL1, RUNX1, SETBP1, NRAS, KRAS, CBL, JAK2, SF3B1; exclusion of BCR-ABL1 and PDGFRA/B rearrangements, CPSS and CPSS-Mol risk score, Germline NF1, PTPN11, CBL in JMML.

Scans and tests linked to this cancer: Cytogenetics and FISH, Multiparameter flow cytometry MRD, Clinical NGS bioinformatics and variant interpretation.

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