Appointment sheet
Lower-risk myelodysplastic syndromes
Prepared with OnCo (onco.cc/prep/mds-lower-risk/). 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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
16 on the sheetNewly diagnosed
- 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 scores, Serum erythropoietin level, Ring sideroblasts and SF3B1 mutation, del, Transfusion burden), 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?
Asymptomatic, no transfusions
- 5.For my situation (asymptomatic, no transfusions), which of the standard options do you recommend and why?
Anaemia, first line
- 6.For my situation (anaemia, first line), which of the standard options do you recommend and why?
- 7.Am I a candidate for Luspatercept, Epoetin alfa, Darbepoetin alfa or related drugs, and what side effects should I expect?
Anaemia after erythropoietin or luspatercept failure
- 8.For my situation (anaemia after erythropoietin or luspatercept failure), which of the standard options do you recommend and why?
- 9.Am I a candidate for Imetelstat, Luspatercept, Azacitidine, and what side effects should I expect?
- 10.How do the results of A Study of Elritercept to Treat Anemia in Adults With Very Low, Low, or Intermediate Risk Myelodysplastic Syndromes (MDS) Who Need Regular B and Study of R289 in Patients With Lower-risk Myelodysplastic Syndromes (LR MDS) apply to someone like me?
Supportive care
- 11.For my situation (supportive care), which of the standard options do you recommend and why?
Any stage
- 12.Are there clinical trials I could join, for example of Luspatercept, Imetelstat, A Study of Elritercept to Treat Anemia in Adults With Very Low, Low, or Intermediate Risk Myelodysplastic Syndromes (MDS) Who Need Regular B, Study of R289 in Patients With Lower-risk Myelodysplastic Syndromes (LR MDS)?
- 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 approved treatment for thrombocytopenia or neutropenia in lower-risk disease”. How does that affect my plan?
- 16.I read that “Whether early disease-modifying treatment changes the natural history rather than the transfusion count”. How does that affect my plan?
The words I may hear
- Disease-specific staging and risk systems (FIGO, Ann Arbor, IPI, R-ISS, ELN, IMDC): Beyond the generic TNM system, gynaecological cancers (FIGO), lymphoma (Ann Arbor, IPI), myeloma (R-ISS), AML (ELN), kidney cancer (IMDC), neuroblastoma (INRG) and CLL (Rai, Binet) each have their own system that combines stage, blood tests, genetics and fitness into risk groups.
- Anaemia: A shortage of red blood cells or haemoglobin, causing tiredness and breathlessness.
- 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.
Tests and results to bring
Biomarker results to ask for: IPSS-R and IPSS-M scores, Serum erythropoietin level, Ring sideroblasts and SF3B1 mutation, del(5q), Transfusion burden, Serum ferritin and iron overload, TP53 and other adverse mutations on IPSS-M.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Asymptomatic, no transfusions: Observation with blood counts every three to six months; no treatment. (Transfusion support and anaemia management)
- Anaemia, first line: Luspatercept for ring-sideroblast or SF3B1-mutated disease and for transfusion-dependent patients (COMMANDS); erythropoiesis-stimulating agent where serum erythropoietin is below 500 U/L; lenalidomide for del(5q). (Luspatercept, Epoetin alfa, Darbepoetin alfa, Lenalidomide)
- Anaemia after erythropoietin or luspatercept failure: Imetelstat (IMerge); luspatercept if not yet used; low-dose hypomethylating agent; trials of elritercept and other agents. (Imetelstat, Luspatercept, Azacitidine, A Study of Elritercept to Treat Anemia in Adults With Very Low, Low, or Intermediate Risk Myelodysplastic Syndromes (MDS) Who Need Regular B, Study of R289 in Patients With Lower-risk Myelodysplastic Syndromes (LR MDS), RVU120 for Treatment of Anemia in Patients With Lower-risk Myelodysplastic Neoplasms)
- Supportive care: Red cell transfusion to symptoms, iron chelation once ferritin is persistently high, G-CSF for recurrent neutropenic infection, platelet transfusion for bleeding. (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.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call