Multiple myeloma
Prepared with OnCo (onco.cc/prep/multiple-myeloma/). 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
30 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 Cytogenetics, 1q gain), R-ISS, MRD, BCMA/GPRC5D expression, Serum and urine M-protein, free light chains), 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 (newly diagnosed), which of the standard options do you recommend and why?
- 6.For my situation (relapsed), which of the standard options do you recommend and why?
- 7.Am I a candidate for Ciltacabtagene autoleucel, Teclistamab, Belantamab mafodotin, and what side effects should I expect?
- 8.For my situation (mgus / low-risk smouldering), which of the standard options do you recommend and why?
- 9.How do the results of iStopMM apply to someone like me?
- 10.For my situation (high-risk smouldering myeloma), which of the standard options do you recommend and why?
- 11.Am I a candidate for Daratumumab, Lenalidomide, and what side effects should I expect?
- 12.For my situation (newly diagnosed, transplant-eligible), which of the standard options do you recommend and why?
- 13.Am I a candidate for Daratumumab, Bortezomib, Lenalidomide, and what side effects should I expect?
- 14.How do the results of PERSEUS apply to someone like me?
- 15.For my situation (newly diagnosed, transplant-ineligible), which of the standard options do you recommend and why?
- 16.Am I a candidate for Daratumumab, Isatuximab, Lenalidomide, and what side effects should I expect?
- 17.How do the results of CEPHEUS and IMROZ apply to someone like me?
- 18.For my situation (maintenance), which of the standard options do you recommend and why?
- 19.Am I a candidate for Lenalidomide, Daratumumab, Iberdomide, and what side effects should I expect?
- 20.For my situation (first relapse (1-3 prior lines)), which of the standard options do you recommend and why?
- 21.Am I a candidate for Ciltacabtagene autoleucel, Teclistamab, Idecabtagene vicleucel or related drugs, and what side effects should I expect?
- 22.How do the results of CARTITUDE-4 and MajesTEC-3 apply to someone like me?
- 23.For my situation (triple-class refractory (≥3-4 prior lines)), which of the standard options do you recommend and why?
- 24.Am I a candidate for Teclistamab, Elranatamab, Linvoseltamab or related drugs, and what side effects should I expect?
- 25.For my situation (supportive care), which of the standard options do you recommend and why?
- 26.Are there clinical trials I could join, for example of Teclistamab, Ciltacabtagene autoleucel, Cevostamab, JNJ-79635322?
- 27.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 28.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 29.I read that “High-risk cytogenetics”. How does that affect my plan?
- 30.I read that “Infections with T-cell redirecting therapy”. How does that affect my plan?
The words I may hear
- MRD negativity (myeloma, 10⁻⁵ / 10⁻⁶): MRD negativity means no detectable myeloma cell among 100,000 or a million marrow cells.
- VRd and Dara-VRd (myeloma induction regimens): The alphabet soup of myeloma treatment: V (bortezomib, Velcade), R (lenalidomide, Revlimid), d (dexamethasone), Dara (daratumumab), Isa (isatuximab), K (carfilzomib).
- Smouldering myeloma / MGUS: Early plasma-cell conditions with no organ damage; most never progress, but high-risk smouldering disease is now sometimes treated.
- Proteasome inhibitor (bortezomib, carfilzomib, ixazomib): Drugs that block the cell's protein-recycling machine.
- R-ISS / R2-ISS staging: R-ISS is the myeloma staging system, combining blood markers with high-risk chromosome changes to predict outcome.
- High-risk cytogenetics (myeloma): Chromosome changes such as del(17p), t(4;14), t(14;16) and extra copies of 1q that mark myeloma likely to relapse early.
- 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.
- ICANS (neurotoxicity): ICANS is confusion, speech difficulty, and rarely seizures after CAR-T or bispecific therapy.
- Cancer health disparities and equity: Systematic differences in who gets cancer, how early it is found and who survives, driven by race, income, geography, insurance and structural racism rather than biology alone.
- Fixed-duration vs continuous therapy: Whether a drug is taken for a set period (say 12 months) and then stopped even though it is still working, or continued indefinitely until it fails.
Tests and results to bring
Newly diagnosed: Dara-VRd ± ASCT → lenalidomide maintenance.
Newly diagnosed, transplant-eligible: Dara-VRd (or Isa-VRd) induction × 4-6 → stem-cell collection → high-dose melphalan + autologous transplant → Dara-VRd consolidation → lenalidomide (± daratumumab) maintenance; MRD-guided de-escalation emerging (PERSEUS design). Tandem transplant or extended therapy for high risk.
Newly diagnosed, transplant-ineligible: Dara-VRd (CEPHEUS) or Isa-VRd (IMROZ) with bortezomib de-escalation after induction; Dara-Rd (MAIA) for frailer patients; continuous therapy with dose adjustment for frailty.
Biomarker results to ask for: Cytogenetics (del17p, t(4;14), 1q gain), R-ISS, MRD (NGS/flow), BCMA/GPRC5D expression, Serum and urine M-protein, free light chains, R-ISS / R2-ISS (β2-microglobulin, albumin, LDH, FISH), FISH: del(17p), t(4;14), t(14;16), t(14;20), 1q gain/amp, del(1p), TP53 mutation, MRD by NGS (clonoSEQ) or next-generation flow at 10⁻⁵ to 10⁻⁶, PET-CT and whole-body MRI (IMWG imaging), BCMA and GPRC5D expression / TNFRSF17 loss at relapse, Renal function, calcium, haemoglobin (CRAB criteria), Soluble BCMA (research).
Scans and tests linked to this cancer: FDG PET, Flow cytometers, Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD), PET (positron emission tomography), PET/CT.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- High-risk smouldering myeloma: Consider daratumumab monotherapy (AQUILA) or lenalidomide (E3A06), or trial enrolment; shared decision given indolent course in many. (Daratumumab, Lenalidomide, Smouldering myeloma / MGUS)
- MGUS / low-risk smouldering: Observation with periodic labs; no treatment outside trials. (Smouldering myeloma / MGUS, iStopMM)
- Relapsed: CAR-T or bispecific; belantamab combinations; sequencing by prior exposure. (Ciltacabtagene autoleucel, Teclistamab, Belantamab mafodotin)
- First relapse (1-3 prior lines): Cilta-cel if lenalidomide-refractory (CARTITUDE-4); teclistamab + daratumumab (MajesTEC-3, 2026); ide-cel after ≥2 lines; belantamab-Vd or -Pd (DREAMM-7/8); CD38-based triplets (Dara-Kd, Isa-Kd, Dara-Pd) by prior exposure; carfilzomib or pomalidomide combinations. (Ciltacabtagene autoleucel, CARTITUDE-4, Teclistamab, MajesTEC-3, Idecabtagene vicleucel, KarMMa-3, Belantamab mafodotin, DREAMM-7, DREAMM-8, Carfilzomib)
- Triple-class refractory (≥3-4 prior lines): BCMA CAR-T if not yet given; bispecifics (teclistamab, elranatamab, linvoseltamab; talquetamab after BCMA exposure); belantamab; selinexor-based; CELMoDs in trials; anito-cel (PDUFA Dec 2026). (Teclistamab, Elranatamab, Linvoseltamab, Talquetamab, Belantamab mafodotin, Mezigdomide, Anitocabtagene autoleucel, BCMA-directed therapy → GPRC5D-directed therapy)
- Maintenance: Lenalidomide until progression (CALGB 100104, Myeloma XI); daratumumab added for high-risk or per PERSEUS; MRD-guided discontinuation in trials (DRAMMATIC, MASTER); iberdomide maintenance (EXCALIBER) pending. (Lenalidomide, Daratumumab, Iberdomide, MRD-guided treatment-free intervals in myeloma)
- Supportive care: Bisphosphonate or denosumab for bone disease; IVIG, antiviral, PJP prophylaxis and vaccination during T-cell redirection; thromboprophylaxis with IMiDs; renal protection; radiotherapy for painful lesions or cord compression. (Caution: T-cell redirectors and infections, IMRT / IGRT (modern external beam))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.