Myelodysplastic syndromes / neoplasms (MDS)
Prepared with OnCo (onco.cc/prep/mds/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
16 on the sheet- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 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.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
- 5.For my situation (lower risk, anaemia), which of the standard options do you recommend and why?
- 6.Am I a candidate for Luspatercept, Imetelstat, Lenalidomide, and what side effects should I expect?
- 7.For my situation (higher risk, transplant candidate), which of the standard options do you recommend and why?
- 8.Am I a candidate for Azacitidine, and what side effects should I expect?
- 9.For my situation (higher risk, not transplant candidate), which of the standard options do you recommend and why?
- 10.Am I a candidate for Azacitidine, Decitabine + cedazuridine (oral), and what side effects should I expect?
- 11.For my situation (supportive care, all risks), which of the standard options do you recommend and why?
- 12.Are there clinical trials I could join, for example of Imetelstat, Luspatercept, Allogeneic stem cell transplantation, Tuspetinib?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “No drug has beaten azacitidine in higher-risk MDS”. How does that affect my plan?
- 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
- Lower risk, anaemia: ESA if serum EPO <500; luspatercept first line (COMMANDS) or after ESA failure (MEDALIST); imetelstat after ESA failure (IMerge); lenalidomide for del(5q). (Luspatercept, Imetelstat, Lenalidomide)
- Higher risk, transplant candidate: Allogeneic HSCT, usually after hypomethylating-agent cytoreduction; BMT CTN 1102 showed a survival benefit for transplant in 50-75-year-olds. (Allogeneic stem cell transplantation, Azacitidine)
- Higher risk, not transplant candidate: Azacitidine (AZA-001) or decitabine / oral decitabine-cedazuridine until progression; supportive care and trials. (Azacitidine, Decitabine + cedazuridine (oral))
- Supportive care, all risks: Transfusion, iron chelation for transfusional iron overload (TELESTO), infection management, G-CSF for neutropenic infection. (Transfusion support and anaemia management, Growth factors: G-CSF and febrile neutropenia prevention)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.