Newly diagnosed multiple myeloma, transplant-eligible
Prepared with OnCo (onco.cc/prep/myeloma-transplant-eligible/). 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
18 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 R-ISS and R2-ISS stage, FISH: del, t, t, gain or amplification 1q, Lactate dehydrogenase, Serum free light chains and M-protein, MRD by next-generation sequencing or flow cytometry at 10^-5 and 10^-6), 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 (induction), which of the standard options do you recommend and why?
- 6.Am I a candidate for Daratumumab, Bortezomib, Lenalidomide or related drugs, and what side effects should I expect?
- 7.How do the results of PERSEUS apply to someone like me?
- 8.For my situation (consolidation), which of the standard options do you recommend and why?
- 9.Am I a candidate for Melphalan (including hepatic delivery system), and what side effects should I expect?
- 10.For my situation (maintenance), which of the standard options do you recommend and why?
- 11.Am I a candidate for Lenalidomide, Daratumumab, Bortezomib, and what side effects should I expect?
- 12.How do the results of PERSEUS apply to someone like me?
- 13.For my situation (response assessment), which of the standard options do you recommend and why?
- 14.Are there clinical trials I could join, for example of Daratumumab, Isatuximab, Ciltacabtagene autoleucel, CARTITUDE-5?
- 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 “Whether high-dose melphalan is still necessary after a quadruplet that produces MRD negativity”. How does that affect my plan?
- 18.I read that “Whether MRD-negative patients can stop maintenance safely”. How does that affect my plan?
The words I may hear
- 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).
- MRD negativity (myeloma, 10⁻⁵ / 10⁻⁶): MRD negativity means no detectable myeloma cell among 100,000 or a million marrow cells.
- 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.
- Proteasome inhibitor (bortezomib, carfilzomib, ixazomib): Drugs that block the cell's protein-recycling machine.
- Autologous stem cell transplant (ASCT): High-dose chemotherapy (melphalan in myeloma, BEAM in lymphoma) that would permanently destroy the bone marrow, made survivable by giving the patient back their own previously collected stem cells, which engraft in 10-14 days.
- Maintenance therapy: Ongoing, gentler treatment given after the main course has shrunk the cancer, to hold it in check for as long as possible rather than to shrink it further.
Tests and results to bring
Biomarker results to ask for: R-ISS and R2-ISS stage, FISH: del(17p), t(4;14), t(14;16), gain or amplification 1q, Lactate dehydrogenase, Serum free light chains and M-protein, MRD by next-generation sequencing or flow cytometry at 10^-5 and 10^-6, Frailty and organ function for transplant fitness.
Scans and tests linked to this cancer: Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD), PET/CT, Whole-body MRI.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Induction: Daratumumab plus bortezomib, lenalidomide and dexamethasone (PERSEUS) for four to six cycles; isatuximab-VRd or daratumumab-VTd (CASSIOPEIA) are alternatives. (Daratumumab, Bortezomib, Lenalidomide, Dexamethasone, PERSEUS, Isatuximab, VRd and Dara-VRd (myeloma induction regimens), CD38 antibody added to PI-IMiD-dex (quadruplet induction))
- Consolidation: High-dose melphalan with autologous stem cell transplant, early or deferred to first relapse after stem cell collection; tandem transplant considered in high-risk disease. (Melphalan (including hepatic delivery system), Autologous stem cell transplant (high-dose therapy), Autologous stem cell transplant (ASCT))
- Response assessment: M-protein and free light chains every cycle, MRD by sequencing or flow cytometry after transplant and during maintenance, imaging for residual focal lesions. (NGS-based MRD (clonoSEQ and molecular MRD), Multiparameter flow cytometry MRD, MRD negativity (myeloma, 10⁻⁵ / 10⁻⁶), Whole-body MRI, PET/CT)
- Maintenance: Lenalidomide until progression; daratumumab added after daratumumab-based induction (PERSEUS); bortezomib-containing maintenance in high-risk disease; MRD-guided stopping in trials. (Lenalidomide, Daratumumab, Bortezomib, PERSEUS, Maintenance therapy, MRD-guided treatment-free intervals in myeloma)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.