Appointment sheet
Higher-risk myelodysplastic syndromes
Prepared with OnCo (onco.cc/prep/mds-higher-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
18 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, Marrow blast percentage, Karyotype: complex, monosomy 7, del, TP53 mutation and allelic state, ASXL1, RUNX1, EZH2 and spliceosome mutations), 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?
Transplant candidate
- 5.For my situation (transplant candidate), which of the standard options do you recommend and why?
- 6.Am I a candidate for Azacitidine, Decitabine, and what side effects should I expect?
- 7.How do the results of Trial of Orca-T Following Reduced Intensity or Nonmyeloablative Conditioning in Patients With Acute Myeloid Leukemia or Myelodysplastic Syndrome apply to someone like me?
Not a transplant candidate
- 8.For my situation (not a transplant candidate), which of the standard options do you recommend and why?
- 9.Am I a candidate for Azacitidine, Decitabine, Decitabine + cedazuridine (oral), and what side effects should I expect?
- 10.How do the results of A Study Comparing Treatment Preference Between Oral Decitabine/Cedazuridine and Azacitidine in Myelodysplastic Syndrome, Low-Blast Acute Myeloid Leukemia, or Chronic Myelomonocytic Leukemia apply to someone like me?
Failure of hypomethylating therapy
- 11.For my situation (failure of hypomethylating therapy), which of the standard options do you recommend and why?
- 12.Am I a candidate for Venetoclax, Ivosidenib, Revumenib, and what side effects should I expect?
- 13.How do the results of A Study of CTX-712 in Relapsed/Refractory Acute Myeloid Leukemia and Higher Risk Myelodysplastic Syndromes apply to someone like me?
Any stage
- 14.Are there clinical trials I could join, for example of Allogeneic stem cell transplantation, Venetoclax, Revumenib, Tuspetinib?
- 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 17.I read that “Nothing has beaten azacitidine alone in a phase 3 trial”. How does that affect my plan?
- 18.I read that “TP53 multi-hit disease relapses after transplant and responds to no drug durably”. 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.
- Conditioning regimen (myeloablative, reduced-intensity): The chemotherapy (with or without whole-body radiation) given in the days before a stem cell transplant to destroy the diseased marrow and, for donor transplants, suppress the patient's immune system so the graft is not rejected.
- Allogeneic stem cell transplant (allo-SCT): Replacing a patient's blood system with a donor's: chemotherapy wipes out the marrow, donor stem cells rebuild it, and the donor's immune cells hunt down leftover leukaemia.
- Hypomethylating agents (azacitidine, decitabine): Low-intensity chemotherapy that strips chemical 'off' switches (methyl groups) from DNA so silenced genes can be read again.
- TP53-mutated (p53-abnormal): Loss of the p53 'guardian of the genome', the most commonly mutated gene in cancer.
Tests and results to bring
Biomarker results to ask for: IPSS-R and IPSS-M scores, Marrow blast percentage, Karyotype: complex, monosomy 7, del(7q), TP53 mutation and allelic state, ASXL1, RUNX1, EZH2 and spliceosome mutations, Donor availability and HCT comorbidity index, Measurable residual disease before and after transplant.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Transplant candidate: Allogeneic stem cell transplant after donor search, usually with azacitidine or decitabine to bridge and reduce blasts; reduced-intensity conditioning in older patients. (Allogeneic stem cell transplantation, Azacitidine, Decitabine, Conditioning regimen (myeloablative, reduced-intensity), Trial of Orca-T Following Reduced Intensity or Nonmyeloablative Conditioning in Patients With Acute Myeloid Leukemia or Myelodysplastic Syndrome)
- Not a transplant candidate: Azacitidine (AZA-001) or decitabine, or oral decitabine-cedazuridine, continued until progression; trials of hypomethylating agent combinations. (Azacitidine, Decitabine, Decitabine + cedazuridine (oral), Hypomethylating agents (azacitidine, decitabine), A Study Comparing Treatment Preference Between Oral Decitabine/Cedazuridine and Azacitidine in Myelodysplastic Syndrome, Low-Blast Acute Myeloid Leukemia, or Chronic Myelomonocytic Leukemia)
- Failure of hypomethylating therapy: Clinical trial; venetoclax combinations off-label in selected patients; genotype-directed drugs where IDH, FLT3 or KMT2A targets exist; best supportive care. (Venetoclax, Ivosidenib, Revumenib, Transfusion support and anaemia management, A Study of CTX-712 in Relapsed/Refractory Acute Myeloid Leukemia and Higher Risk Myelodysplastic Syndromes)
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