Appointment sheet
Intravascular large B-cell lymphoma
Prepared with OnCo (onco.cc/prep/intravascular-large-b-cell-lymphoma/). 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 Random skin biopsy or organ biopsy showing intravascular CD20-positive large cells, Lactate dehydrogenase and ferritin, Cerebrospinal fluid and MRI for central nervous system disease, MYD88 L265P and CD79B mutations), 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, Cyclophosphamide, Methotrexate, 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
- MYD88 L265P and CXCR4 mutations: One letter change in MYD88 (L265P) keeps a B-cell survival signal permanently on; it is found in more than nine in ten Waldenström's macroglobulinaemia, most primary CNS and testicular lymphomas and a poor-risk group of DLBCL, and it predicts that BTK inhibitors will work, while a second mutation in CXCR4 predicts that they will work more slowly.
- 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.
Tests and results to bring
Biomarker results to ask for: Random skin biopsy or organ biopsy showing intravascular CD20-positive large cells, Lactate dehydrogenase and ferritin (haemophagocytic variant), Cerebrospinal fluid and MRI for central nervous system disease, MYD88 L265P and CD79B mutations (frequent).
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: R-CHOP with high-dose methotrexate and intrathecal chemotherapy (PRIMEUR-IVL); autologous transplant considered in first remission; CNS disease as on the primary CNS lymphoma page. (Rituximab, Cyclophosphamide, Methotrexate, R-CHOP (lymphoma chemoimmunotherapy), Primary CNS lymphoma)
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