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Appointment sheet: Infant acute lymphoblastic leukaemia (KMT2A-rearranged, under one year)

One page to bring and write on: your details, the questions for Infant acute lymphoblastic leukaemia (KMT2A-rearranged, under one year) 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

Infant acute lymphoblastic leukaemia (KMT2A-rearranged, under one year)

Prepared with OnCo (onco.cc/prep/all-infant/). 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

20 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 KMT2A rearrangement by FISH or RNA sequencing, and partner gene, Age at diagnosis, Presenting white cell count, Prednisone response at day 8, Flow cytometry MRD at end of induction), 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?
Induction
  1. 5.For my situation (induction), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Prednisone, Dexamethasone, Vincristine or related drugs, and what side effects should I expect?
  3. 7.How do the results of Interfant-06 apply to someone like me?
Post-induction, KMT2A-rearranged
  1. 8.For my situation (post-induction, kmt2a-rearranged), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Blinatumomab, Cytarabine, Methotrexate or related drugs, and what side effects should I expect?
  3. 10.How do the results of Interfant-06 apply to someone like me?
High risk
  1. 11.For my situation (high risk), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Blinatumomab, and what side effects should I expect?
Relapsed or refractory
  1. 13.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Revumenib, Ziftomenib, Blinatumomab or related drugs, and what side effects should I expect?
  3. 15.How do the results of AUGMENT-101 apply to someone like me?
Any stage
  1. 16.Are there clinical trials I could join, for example of Blinatumomab, Revumenib, Ziftomenib, Menin inhibitors?
  2. 17.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 18.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 19.I read that “Infants who relapse within the first year despite blinatumomab”. How does that affect my plan?
  5. 20.I read that “Lineage switch to myeloid leukaemia under CD19-directed therapy”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: KMT2A rearrangement by FISH or RNA sequencing, and partner gene, Age at diagnosis (under or over 6 months), Presenting white cell count, Prednisone response at day 8, Flow cytometry MRD at end of induction, CD10-negative B-cell immunophenotype with myeloid markers, CNS status.

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