Appointment sheet
T-cell large granular lymphocytic leukaemia
Prepared with OnCo (onco.cc/prep/t-large-granular-lymphocytic-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
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 Clonal T-cell receptor rearrangement with increased large granular lymphocytes, STAT3 SH2 domain mutations, Neutrophil count and haemoglobin, Rheumatoid factor and autoimmune screen), 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?
Symptomatic or cytopenic
- 5.For my situation (symptomatic or cytopenic), which of the standard options do you recommend and why?
- 6.Am I a candidate for Methotrexate, Cyclophosphamide, Alemtuzumab 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?
Tests and results to bring
Biomarker results to ask for: Clonal T-cell receptor rearrangement with increased large granular lymphocytes, STAT3 SH2 domain mutations (Y640F, D661V, D661Y, N647I), Neutrophil count and haemoglobin (treatment indication), Rheumatoid factor and autoimmune screen.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Symptomatic or cytopenic: Low-dose methotrexate, cyclosporin or cyclophosphamide, used sequentially; salvage with alemtuzumab, JAK inhibitors or splenectomy. (Methotrexate, Cyclophosphamide, Alemtuzumab, Ruxolitinib, Leukaemia (all types))
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