Appointment sheet
T-cell prolymphocytic leukaemia
Prepared with OnCo (onco.cc/prep/t-cell-prolymphocytic-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
11 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 invor twith TCL1A expression, or MTCP1 rearrangement, Complex karyotype and ATM mutations, CD52 expression, Lymphocyte count and doubling time), 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?
Active disease
- 5.For my situation (active disease), which of the standard options do you recommend and why?
- 6.Am I a candidate for Alemtuzumab, and what side effects should I expect?
Relapsed
- 7.For my situation (relapsed), which of the standard options do you recommend and why?
- 8.Am I a candidate for Venetoclax, Ibrutinib, and what side effects should I expect?
- 9.How do the results of A Study Evaluating APG-115 as a Single Agent or in Combination With APG-2575 in Subjects With R/R T-PLL and NHL apply to someone like me?
Any stage
- 10.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 11.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: inv(14) or t(14;14) with TCL1A expression, or MTCP1 rearrangement, Complex karyotype and ATM mutations, CD52 expression (alemtuzumab target), Lymphocyte count and doubling time (treatment indication).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Active disease: Intravenous alemtuzumab to best response, then allogeneic or autologous stem cell transplant in fit patients. (Alemtuzumab, Allogeneic stem cell transplant (allo-SCT), Leukaemia (all types))
- Relapsed: Venetoclax with or without ibrutinib; trials such as the MDM2 inhibitor study linked here. (Venetoclax, Ibrutinib, A Study Evaluating APG-115 as a Single Agent or in Combination With APG-2575 in Subjects With R/R T-PLL and NHL)
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