Appointment sheet
Relapsed or refractory multiple myeloma
Prepared with OnCo (onco.cc/prep/myeloma-relapsed-refractory/). 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
19 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 Classes and agents the disease is refractory to, Time from last therapy and depth of prior response, BCMA and GPRC5D expression and BCMA loss after prior BCMA therapy, Soluble BCMA, Extramedullary disease on PET-CT), 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?
First relapse, lenalidomide-refractory
- 5.For my situation (first relapse, lenalidomide-refractory), which of the standard options do you recommend and why?
- 6.Am I a candidate for Daratumumab, Isatuximab, Carfilzomib or related drugs, and what side effects should I expect?
- 7.How do the results of DREAMM-7 and DREAMM-8 apply to someone like me?
Triple-class exposed, two or more prior lines
- 8.For my situation (triple-class exposed, two or more prior lines), which of the standard options do you recommend and why?
- 9.Am I a candidate for Ciltacabtagene autoleucel, Idecabtagene vicleucel, Teclistamab or related drugs, and what side effects should I expect?
- 10.How do the results of KarMMa-3 and CARTITUDE-1 apply to someone like me?
After BCMA-directed therapy
- 11.For my situation (after bcma-directed therapy), which of the standard options do you recommend and why?
- 12.Am I a candidate for Talquetamab, Selinexor, Iberdomide or related drugs, and what side effects should I expect?
- 13.How do the results of MonumenTAL-1 apply to someone like me?
Toxicity management
- 14.For my situation (toxicity management), which of the standard options do you recommend and why?
Any stage
- 15.Are there clinical trials I could join, for example of Ciltacabtagene autoleucel, Teclistamab, Talquetamab, Linvoseltamab?
- 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 18.I read that “Sequencing CAR-T and bispecifics, and whether a second T-cell therapy works after the first”. How does that affect my plan?
- 19.I read that “Infections on continuous BCMA bispecifics, and whether fixed-duration dosing is safe”. How does that affect my plan?
The words I may hear
- Step-up dosing (T-cell engagers): Starting a bispecific T-cell engager (teclistamab, glofitamab, epcoritamab, tarlatamab) at a tiny dose and increasing it over the first week, so T cells are switched on gradually and the fever-and-low-blood-pressure reaction (cytokine release syndrome) stays mild.
- MRD negativity (myeloma, 10⁻⁵ / 10⁻⁶): MRD negativity means no detectable myeloma cell among 100,000 or a million marrow cells.
- ICANS (neurotoxicity): ICANS is confusion, speech difficulty, and rarely seizures after CAR-T or bispecific therapy.
- 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.
- Proteasome inhibitor (bortezomib, carfilzomib, ixazomib): Drugs that block the cell's protein-recycling machine.
- Cytokine release syndrome (CRS): A flood of inflammatory signals when immune cells are activated en masse, causing fever, low blood pressure, and sometimes organ failure.
Tests and results to bring
Biomarker results to ask for: Classes and agents the disease is refractory to, Time from last therapy and depth of prior response, BCMA and GPRC5D expression and BCMA loss after prior BCMA therapy, Soluble BCMA, Extramedullary disease on PET-CT, Cytogenetics at relapse (del(17p), 1q gain), Lymphocyte count and fitness for apheresis.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Triple-class exposed, two or more prior lines: BCMA CAR-T (cilta-cel or ide-cel, KarMMa-3) where slots and fitness allow; BCMA bispecific (teclistamab, elranatamab, linvoseltamab) otherwise; teclistamab-daratumumab (MajesTEC-3). (Ciltacabtagene autoleucel, Idecabtagene vicleucel, KarMMa-3, CARTITUDE-1, Teclistamab, Elranatamab, Linvoseltamab, MajesTEC-1, MajesTEC-3, LINKER-MM1, MagnetisMM-3)
- After BCMA-directed therapy: Talquetamab against GPRC5D (MonumenTAL-1); selinexor combinations; CELMoDs and trispecifics in trials. (Talquetamab, MonumenTAL-1, Selinexor, Iberdomide, Mezigdomide, BCMA-directed therapy → GPRC5D-directed therapy)
- Toxicity management: Step-up dosing and tocilizumab for cytokine release syndrome, immunoglobulin replacement and antimicrobial prophylaxis on bispecifics, neurological monitoring after cilta-cel, ocular examinations on belantamab. (Step-up dosing (T-cell engagers), Cytokine release syndrome (CRS), ICANS (neurotoxicity), Caution: T-cell redirectors and infections)
- First relapse, lenalidomide-refractory: Daratumumab or isatuximab with carfilzomib or pomalidomide and dexamethasone; belantamab mafodotin with bortezomib- or pomalidomide-dexamethasone (DREAMM-7, DREAMM-8); cilta-cel after one to three lines (CARTITUDE-4). (Daratumumab, Isatuximab, Carfilzomib, Pomalidomide, Dexamethasone, Belantamab mafodotin, DREAMM-7, DREAMM-8, Ciltacabtagene autoleucel, CARTITUDE-4)
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