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Living with cancer· Appointment prep

Appointment sheet: Richter transformation of chronic lymphocytic leukaemia

One page to bring and write on: your details, the questions for Richter transformation of 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

Richter transformation of chronic lymphocytic leukaemia

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

17 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 PET-CT maximum SUV of the hottest node, Lactate dehydrogenase, Clonal relationship by IGHV sequencing, TP53, NOTCH1, CDKN2A and MYC lesions, Ki-67 on biopsy), 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?
Diagnosis
  1. 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Diffuse large B-cell type, first treatment
  1. 6.For my situation (diffuse large b-cell type, first treatment), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Rituximab, Cyclophosphamide, Prednisone or related drugs, and what side effects should I expect?
  3. 8.How do the results of Safety and Efficacy Study of Epcoritamab in Subjects With Relapsed/Refractory Chronic Lymphocytic Leukemia and Richter's Syndrome apply to someone like me?
Consolidation in responders
  1. 9.For my situation (consolidation in responders), which of the standard options do you recommend and why?
Relapsed or chemotherapy-refractory
  1. 10.For my situation (relapsed or chemotherapy-refractory), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Pirtobrutinib, Acalabrutinib, and what side effects should I expect?
  3. 12.How do the results of Safety and Efficacy Study of Epcoritamab in Subjects With Relapsed/Refractory Chronic Lymphocytic Leukemia and Richter's Syndrome and ACP-196 (Acalabrutinib), a Novel Bruton Tyrosine Kinase (BTK) Inhibitor, for Treatment of Chronic Lymphocytic Leukemia, Richter's Syndrome or Prolymphocytic Leukemia apply to someone like me?
Any stage
  1. 13.Are there clinical trials I could join, for example of Pirtobrutinib, Venetoclax, Safety and Efficacy Study of Epcoritamab in Subjects With Relapsed/Refractory Chronic Lymphocytic Leukemia and Richter's Syndrome, ACP-196 (Acalabrutinib), a Novel Bruton Tyrosine Kinase (BTK) Inhibitor, for Treatment of Chronic Lymphocytic Leukemia, Richter's Syndrome or Prolymphocytic Leukemia?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “No regimen reliably produces durable remission in clonally related disease”. How does that affect my plan?
  5. 17.I read that “Richter transformation is excluded from most trials, so evidence comes from small cohorts”. How does that affect my plan?

The words I may hear

  • R-CHOP (lymphoma chemoimmunotherapy): R-CHOP is the standard first treatment for diffuse large B-cell lymphoma: rituximab (an antibody against CD20) plus four chemotherapy drugs (cyclophosphamide, doxorubicin, vincristine, prednisone), given every three weeks for six cycles with curative intent.
  • Richter transformation: When slow CLL suddenly turns into an aggressive lymphoma.
  • del(17p) / TP53 aberration in CLL: A del(17p) deletion or TP53 mutation means loss or damage of the p53 safety gene in CLL.
  • TP53-mutated (p53-abnormal): Loss of the p53 'guardian of the genome', the most commonly mutated gene in cancer.

Tests and results to bring

Diagnosis: Excision biopsy of the PET-hottest node, histology with clonality studies, TP53 and MYC testing; restage CLL and check for cause such as BTK inhibitor progression.

Biomarker results to ask for: PET-CT maximum SUV of the hottest node, Lactate dehydrogenase, Clonal relationship by IGHV sequencing, TP53, NOTCH1, CDKN2A and MYC lesions, Ki-67 on biopsy, Hodgkin versus large B-cell histology, Circulating tumour DNA (research).

Scans and tests linked to this cancer: PET/CT.

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