OnCo

Sign in to keep your watchlist

Your watched pages live in this browser. Sign in with an email link and OnCo keeps the same list on every device you use. Only your email address and your watchlist are stored.

Living with cancer· Appointment prep

Appointment sheet: Philadelphia chromosome-positive acute lymphoblastic leukaemia in children (Ph-positive ALL)

One page to bring and write on: your details, the questions for Philadelphia chromosome-positive acute lymphoblastic leukaemia in children (Ph-positive ALL) 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

Philadelphia chromosome-positive acute lymphoblastic leukaemia in children (Ph-positive ALL)

Prepared with OnCo (onco.cc/prep/all-paediatric-ph-positive/). 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

15 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 BCR::ABL1 by FISH or PCR, BCR::ABL1 transcript quantification during therapy, Flow cytometry MRD at end of induction and consolidation, ABL1 kinase domain mutation testing at relapse, IKZF1 deletion), 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?
  5. 5.For my situation (newly diagnosed), which of the standard options do you recommend and why?
  6. 6.Am I a candidate for Dasatinib, Imatinib, Vincristine or related drugs, and what side effects should I expect?
Poor residual disease response
  1. 7.For my situation (poor residual disease response), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Dasatinib, Imatinib, Blinatumomab, and what side effects should I expect?
Relapsed or refractory
  1. 9.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Ponatinib, Blinatumomab, Tisagenlecleucel or related drugs, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Ponatinib, Blinatumomab, BCR::ABL1 TKI + blinatumomab (chemotherapy-free Ph+ ALL), Transplant-free Ph-positive ALL for MRD-negative adults?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Whether chemotherapy-free kinase inhibitor plus blinatumomab regimens can replace intensive chemotherapy in children”. How does that affect my plan?
  5. 15.I read that “Kinase domain resistance mutations and the lack of paediatric approval for ponatinib”. How does that affect my plan?

The words I may hear

  • Ph-positive ALL: Ph-positive ALL is acute lymphoblastic leukaemia carrying the Philadelphia chromosome.
  • 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.
  • B-ALL risk groups (NCI criteria, ETV6::RUNX1, hyperdiploidy, hypodiploidy, iAMP21, IKZF1, CNS status): Childhood leukaemia treatment is chosen from a risk table built over fifty years: age and white count at diagnosis (the NCI criteria), the chromosome pattern in the blasts (favourable ETV6::RUNX1 and high hyperdiploidy, unfavourable hypodiploidy, iAMP21, KMT2A, Ph-positive and Ph-like), whether leukaemia cells are in the spinal fluid, and above all how fast the leukaemia clears in the first month.
  • 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: Imatinib or dasatinib started in induction and continued throughout intensive BFM or EsPhALL-type chemotherapy; intrathecal therapy without cranial irradiation.

Biomarker results to ask for: BCR::ABL1 by FISH or PCR (p190 and p210 transcripts), BCR::ABL1 transcript quantification during therapy, Flow cytometry MRD at end of induction and consolidation, ABL1 kinase domain mutation testing at relapse, IKZF1 deletion (adverse co-lesion).

Scans and tests linked to this cancer: Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD).

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