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Appointment sheet: Myelodysplastic syndromes / neoplasms (MDS)

One page to bring and write on: your details, the questions for Myelodysplastic syndromes / neoplasms (MDS) 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

Myelodysplastic syndromes / neoplasms (MDS)

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

16 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 IPSS-R and IPSS-M risk, Cytogenetics, -7, complex karyotype), NGS panel, Blast percentage, Serum EPO level), 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?
Lower risk, anaemia
  1. 5.For my situation (lower risk, anaemia), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Luspatercept, Imetelstat, Lenalidomide, and what side effects should I expect?
Higher risk, transplant candidate
  1. 7.For my situation (higher risk, transplant candidate), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Azacitidine, and what side effects should I expect?
Higher risk, not transplant candidate
  1. 9.For my situation (higher risk, not transplant candidate), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Azacitidine, Decitabine + cedazuridine (oral), and what side effects should I expect?
Supportive care, all risks
  1. 11.For my situation (supportive care, all risks), which of the standard options do you recommend and why?
Any stage
  1. 12.Are there clinical trials I could join, for example of Imetelstat, Luspatercept, Allogeneic stem cell transplantation, Tuspetinib?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “No drug has beaten azacitidine in higher-risk MDS”. How does that affect my plan?
  5. 16.I read that “TP53-mutant and complex-karyotype disease: median survival about a year even after transplant”. How does that affect my plan?

The words I may hear

  • Secondary malignancy (therapy-related cancer): A new, different cancer caused by the treatment of the first one: leukaemia after alkylating chemotherapy or PARP inhibitors, solid tumours in irradiated tissue decades later, and rarely T-cell lymphoma after CAR-T.
  • Anaemia: A shortage of red blood cells or haemoglobin, causing tiredness and breathlessness.
  • Differentiation syndrome: When a targeted drug makes leukaemia cells mature all at once, causing fever, fluid in the lungs, and weight gain.
  • Immunomodulatory drugs (IMiDs) and CELMoDs: Thalidomide and its descendants lenalidomide and pomalidomide, which hijack a cellular waste-disposal tag (cereblon) to destroy two proteins myeloma cells depend on, while also revving up T and NK cells.
  • Epigenetic progenitor theory: cancer without a first mutation: The proposal that cancer begins not with a mutation but with a reversible change in how genes are switched on and off in a stem or progenitor cell, which then makes later mutations more likely and more dangerous.
  • Ageing tissue and clonal fields: cancer as a disease of old tissue: Sequencing of healthy skin, gullet and blood shows that by middle age they are patchworks of mutant clones, many carrying classic cancer mutations, yet cancer stays rare until old age.
  • ELN 2022 risk classification: The three-tier system (favourable, intermediate, adverse) that decides how aggressively an adult with AML is treated and whether a transplant is recommended.
  • Hypomethylating agents (azacitidine, decitabine): Low-intensity chemotherapy that strips chemical 'off' switches (methyl groups) from DNA so silenced genes can be read again.
  • Cytopenias and myelosuppression: The umbrella term for low blood counts of any kind (white cells, red cells, platelets) when treatment suppresses the bone marrow.
  • Blasts (leukaemic blast cells): Immature blood cells that should mature in the marrow but in acute leukaemia multiply without growing up.

Tests and results to bring

Biomarker results to ask for: IPSS-R and IPSS-M risk, Cytogenetics (del(5q), -7, complex karyotype), NGS panel (SF3B1, TP53, ASXL1, RUNX1, TET2, DNMT3A, SRSF2, U2AF1), Blast percentage, Serum EPO level (ESA response prediction), Transfusion burden.

Scans and tests linked to this cancer: Cytogenetics and FISH, Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD), Ex vivo drug sensitivity screening in blood cancers (EXALT).

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