Appointment sheet
Splenic B-cell lymphoma/leukaemia with prominent nucleoli (formerly B-cell prolymphocytic leukaemia and hairy cell leukaemia variant)
Prepared with OnCo (onco.cc/prep/splenic-b-cell-lymphoma-leukaemia-prominent-nucleoli/). 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
8 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 Large nucleolated B cells in blood and marrow; CD5 negative, CD25 negative or dim, BRAF V600E absent, TP53 mutation or 17p deletion, Exclusion of cyclin D1 and SOX11and of CLL immunophenotype, Splenomegaly with lymphocytosis), 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?
All cases
- 5.For my situation (all cases), which of the standard options do you recommend and why?
- 6.Am I a candidate for Rituximab, Bendamustine, Ibrutinib or related drugs, and what side effects should I expect?
Any stage
- 7.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 8.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- Allogeneic stem cell transplant (allo-SCT): Replacing a patient's blood system with a donor's: chemotherapy wipes out the marrow, donor stem cells rebuild it, and the donor's immune cells hunt down leftover leukaemia.
Tests and results to bring
Biomarker results to ask for: Large nucleolated B cells in blood and marrow; CD5 negative, CD25 negative or dim, BRAF V600E absent, TP53 mutation or 17p deletion (about half of former B-PLL), Exclusion of cyclin D1 and SOX11 (mantle cell lymphoma) and of CLL immunophenotype, Splenomegaly with lymphocytosis.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- All cases: Rituximab with chemotherapy borrowed from hairy cell leukaemia variant practice; BTK inhibitors or venetoclax by analogy with TP53-disrupted CLL; allogeneic transplant for fit patients; no trial exists. (Rituximab, Bendamustine, Ibrutinib, Venetoclax, Chronic lymphocytic leukaemia, Hairy cell leukaemia)
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