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Living with cancer· Appointment prep

Appointment sheet: Smouldering multiple myeloma

One page to bring and write on: your details, the questions for Smouldering multiple myeloma plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Smouldering multiple myeloma

Prepared with OnCo (onco.cc/prep/smouldering-myeloma/). 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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

15 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Serum M-protein and immunofixation, Free light chain ratio, Marrow plasma cell percentage, Mayo 20/2/20 and IMWG risk scores, High-risk cytogenetics: t, del, gain 1q), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Low- and intermediate-risk
  1. 5.For my situation (low- and intermediate-risk), which of the standard options do you recommend and why?
High-risk (Mayo 20/2/20 or IMWG high risk)
  1. 6.For my situation (high-risk (mayo 20/2/20 or imwg high risk)), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Daratumumab, Lenalidomide, Dexamethasone, and what side effects should I expect?
Trials of interception
  1. 8.For my situation (trials of interception), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Linvoseltamab, Isatuximab, and what side effects should I expect?
  3. 10.How do the results of A Study to Compare Linvoseltamab and Daratumumab Treatment in High-Risk Smoldering Multiple Myeloma (HR-SMM) and A Proof-of-Concept Trial to Study the Safety and Activity of Linvoseltamab in Adult Participants With Smoldering Multiple Myeloma at High Risk of Deve apply to someone like me?
Any stage
  1. 11.Are there clinical trials I could join, for example of Daratumumab, Linvoseltamab, Isatuximab, iStopMM?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “No trial has shown that treating smouldering myeloma lengthens life rather than delaying the label of active disease”. How does that affect my plan?
  5. 15.I read that “Risk models still misclassify many patients in both directions”. How does that affect my plan?

The words I may hear

  • Smouldering myeloma / MGUS: Early plasma-cell conditions with no organ damage; most never progress, but high-risk smouldering disease is now sometimes treated.
  • 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.

Tests and results to bring

Biomarker results to ask for: Serum M-protein and immunofixation, Free light chain ratio, Marrow plasma cell percentage, Mayo 20/2/20 and IMWG risk scores, High-risk cytogenetics: t(4;14), del(17p), gain 1q, Whole-body MRI or PET-CT for focal lesions, Evolving M-protein over time.

Scans and tests linked to this cancer: 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

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 browser
What I was told
Agreed next steps, dates and who to call