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Living with cancer· Appointment prep

Appointment sheet: Plasma cell leukaemia

One page to bring and write on: your details, the questions for Plasma cell leukaemia 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

Plasma cell leukaemia

Prepared with OnCo (onco.cc/prep/plasma-cell-leukaemia/). 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 Circulating plasma cells on blood filmand by flow cytometry, Lactate dehydrogenase, FISH: del, t, t, 1q gain, del, TP53 mutation, Renal function and calcium), 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?
Primary plasma cell leukaemia, induction
  1. 5.For my situation (primary plasma cell leukaemia, induction), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Bortezomib, Daratumumab, Lenalidomide or related drugs, and what side effects should I expect?
Consolidation
  1. 7.For my situation (consolidation), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Melphalan (including hepatic delivery system), Lenalidomide, and what side effects should I expect?
Secondary plasma cell leukaemia or relapse
  1. 9.For my situation (secondary plasma cell leukaemia or relapse), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Teclistamab, Talquetamab, Ciltacabtagene autoleucel or related drugs, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Teclistamab, Ciltacabtagene autoleucel, Daratumumab, Carfilzomib?
  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 randomised trials; treatment is extrapolated from high-risk myeloma”. How does that affect my plan?
  5. 15.I read that “Secondary plasma cell leukaemia has no effective standard”. How does that affect my plan?

The words I may hear

  • 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.
  • Leukaemia (tissue type): Cancer of the blood-forming cells in the bone marrow, which flood the blood with immature or abnormal white cells and crowd out normal blood production.
  • Proteasome inhibitor (bortezomib, carfilzomib, ixazomib): Drugs that block the cell's protein-recycling machine.
  • Flow cytometry (immunophenotyping): A machine that streams cells one by one past lasers and reads the surface proteins (CD markers) each carries, identifying what kind of cell it is.
  • 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.
  • Tumour lysis syndrome (TLS): When a treatment kills cancer cells faster than the body can clear their contents, flooding the blood with potassium, phosphate and uric acid and injuring the kidneys and heart.
  • 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.
  • TP53-mutated (p53-abnormal): Loss of the p53 'guardian of the genome', the most commonly mutated gene in cancer.

Tests and results to bring

Biomarker results to ask for: Circulating plasma cells on blood film (5 percent or more) and by flow cytometry, Lactate dehydrogenase, FISH: del(17p), t(14;16), t(11;14), 1q gain, del(1p), TP53 mutation, Renal function and calcium, Serum free light chains and M-protein, Extramedullary disease on PET-CT.

Scans and tests linked to this cancer: Multiparameter flow cytometry MRD.

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