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Living with cancer· Appointment prep

Appointment sheet: Relapsed or refractory chronic lymphocytic leukaemia

One page to bring and write on: your details, the questions for Relapsed or refractory chronic lymphocytic 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

Relapsed or refractory chronic lymphocytic leukaemia

Prepared with OnCo (onco.cc/prep/cll-relapsed/). 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

18 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 BTK C481S and PLCG2 resistance mutations, BCL2 G101V mutation, deland TP53 mutation re-tested at relapse, Complex karyotype, IGHV status), 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?
Relapse after a BTK inhibitor
  1. 5.For my situation (relapse after a btk inhibitor), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Venetoclax, Rituximab, Obinutuzumab or related drugs, and what side effects should I expect?
  3. 7.How do the results of BRUIN CLL-321 apply to someone like me?
Relapse after venetoclax
  1. 8.For my situation (relapse after venetoclax), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Acalabrutinib, Zanubrutinib, Ibrutinib or related drugs, and what side effects should I expect?
  3. 10.How do the results of ALPINE and RESONATE apply to someone like me?
Double-refractory after BTK inhibitor and venetoclax
  1. 11.For my situation (double-refractory after btk inhibitor and venetoclax), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Pirtobrutinib, Lisocabtagene maraleucel, Idelalisib or related drugs, and what side effects should I expect?
  3. 13.How do the results of TRANSCEND CLL 004 apply to someone like me?
Any stage
  1. 14.Are there clinical trials I could join, for example of Pirtobrutinib, Sonrotoclax, Nemtabrutinib, Lisocabtagene maraleucel?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “Double-refractory disease after BTK inhibitor and venetoclax has no durable option”. How does that affect my plan?
  5. 18.I read that “Whether venetoclax retreatment works as well the second time, and after how long an interval”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: BTK C481S and PLCG2 resistance mutations, BCL2 G101V mutation, del(17p) and TP53 mutation re-tested at relapse, Complex karyotype, IGHV status, Time since fixed-duration therapy ended, Biopsy of a rapidly growing node to exclude Richter transformation.

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