Appointment sheet
Newly diagnosed multiple myeloma, transplant-ineligible
Prepared with OnCo (onco.cc/prep/myeloma-transplant-ineligible/). 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
17 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 IMWG frailty index, R-ISS and R2-ISS stage, FISH cytogenetics: del, t, t, gain 1q, Renal function and light chain burden, MRD by sequencing or flow cytometry), 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?
Fit, transplant-ineligible
- 5.For my situation (fit, transplant-ineligible), which of the standard options do you recommend and why?
- 6.Am I a candidate for Isatuximab, Daratumumab, Bortezomib or related drugs, and what side effects should I expect?
- 7.How do the results of IMROZ and CEPHEUS apply to someone like me?
Intermediate fitness
- 8.For my situation (intermediate fitness), which of the standard options do you recommend and why?
- 9.Am I a candidate for Daratumumab, Lenalidomide, Dexamethasone, and what side effects should I expect?
Frail
- 10.For my situation (frail), which of the standard options do you recommend and why?
- 11.Am I a candidate for Daratumumab, Lenalidomide, Dexamethasone, and what side effects should I expect?
Supportive care, all patients
- 12.For my situation (supportive care, all patients), which of the standard options do you recommend and why?
Any stage
- 13.Are there clinical trials I could join, for example of Isatuximab, Daratumumab, Teclistamab, CARTITUDE-5?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “Frail patients were excluded from the quadruplet trials and gain least from them”. How does that affect my plan?
- 17.I read that “Whether treatment can be fixed in duration or MRD-guided rather than continued until progression”. 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.
- 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.
- 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: IMWG frailty index, R-ISS and R2-ISS stage, FISH cytogenetics: del(17p), t(4;14), t(14;16), gain 1q, Renal function and light chain burden, MRD by sequencing or flow cytometry, Peripheral neuropathy baseline.
Scans and tests linked to this cancer: NGS-based MRD (clonoSEQ and molecular MRD).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Intermediate fitness: Daratumumab with lenalidomide and dexamethasone until progression (MAIA). (Daratumumab, Lenalidomide, Dexamethasone)
- Fit, transplant-ineligible: Isatuximab or daratumumab with bortezomib, lenalidomide and dexamethasone (IMROZ, CEPHEUS), continuing the antibody and lenalidomide until progression. (Isatuximab, Daratumumab, Bortezomib, Lenalidomide, Dexamethasone, IMROZ, CEPHEUS, VRd and Dara-VRd (myeloma induction regimens))
- Frail: Daratumumab-Rd with reduced lenalidomide and dexamethasone, or lenalidomide-dexamethasone alone, with early dose reduction and steroid tapering. (Daratumumab, Lenalidomide, Dexamethasone, Geriatric assessment)
- Supportive care, all patients: Bisphosphonate or denosumab bone protection, antiviral and thrombosis prophylaxis, vaccination, renal protection and early management of neuropathy. (Transfusion support and anaemia management, Maintenance therapy)
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