Appointment sheet
Diffuse large B-cell lymphoma
Prepared with OnCo (onco.cc/prep/dlbcl/). 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
33 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 Cell of origin, Double-hit, CD19/CD20, ctDNA MRD, IPI / NCCN-IPI), 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?
Frontline
- 5.For my situation (frontline), which of the standard options do you recommend and why?
Early relapse
- 6.For my situation (early relapse), which of the standard options do you recommend and why?
- 7.Am I a candidate for Axicabtagene ciloleucel, and what side effects should I expect?
Later
- 8.For my situation (later), which of the standard options do you recommend and why?
- 9.Am I a candidate for Glofitamab, Loncastuximab tesirine, and what side effects should I expect?
Limited stage (I-II, non-bulky)
- 10.For my situation (limited stage (i-ii, non-bulky)), which of the standard options do you recommend and why?
- 11.Am I a candidate for Doxorubicin, and what side effects should I expect?
Advanced stage, IPI 0-1
- 12.For my situation (advanced stage, ipi 0-1), which of the standard options do you recommend and why?
- 13.Am I a candidate for Doxorubicin, Polatuzumab vedotin, and what side effects should I expect?
Advanced stage, IPI 2-5
- 14.For my situation (advanced stage, ipi 2-5), which of the standard options do you recommend and why?
- 15.Am I a candidate for Polatuzumab vedotin, Tafasitamab, and what side effects should I expect?
- 16.How do the results of POLARIX and frontMIND apply to someone like me?
Frail or elderly
- 17.For my situation (frail or elderly), which of the standard options do you recommend and why?
- 18.Am I a candidate for Epcoritamab, Tafasitamab, Lenalidomide, and what side effects should I expect?
Primary refractory or relapse within 12 months
- 19.For my situation (primary refractory or relapse within 12 months), which of the standard options do you recommend and why?
- 20.Am I a candidate for Axicabtagene ciloleucel, and what side effects should I expect?
- 21.How do the results of ZUMA-7 and TRANSFORM apply to someone like me?
Late relapse (>12 months), transplant-eligible
- 22.For my situation (late relapse (>12 months), transplant-eligible), which of the standard options do you recommend and why?
Relapse, transplant-ineligible
- 23.For my situation (relapse, transplant-ineligible), which of the standard options do you recommend and why?
- 24.Am I a candidate for Glofitamab, Epcoritamab, Mosunetuzumab or related drugs, and what side effects should I expect?
- 25.How do the results of SUNMO apply to someone like me?
Third line and beyond
- 26.For my situation (third line and beyond), which of the standard options do you recommend and why?
- 27.Am I a candidate for Axicabtagene ciloleucel, Glofitamab, Epcoritamab or related drugs, and what side effects should I expect?
- 28.How do the results of waveLINE-003 apply to someone like me?
Any stage
- 29.Are there clinical trials I could join, for example of Zilovertamab vedotin, Abexinostat, DZD8586, Rocbrutinib?
- 30.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 31.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 32.I read that “Primary refractory disease”. How does that affect my plan?
- 33.I read that “CAR-T access and cost”. How does that affect my plan?
The words I may hear
- International Prognostic Index (IPI): A five-point score (age, stage, performance status, LDH, extranodal sites) that predicts how risky a lymphoma is before treatment.
- 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.
- Double-hit / high-grade B-cell lymphoma: Double-hit lymphoma is a large B-cell lymphoma with rearrangements of two oncogenes (MYC plus BCL2 and/or BCL6), which behaves aggressively and often escapes R-CHOP.
- ICANS (neurotoxicity): ICANS is confusion, speech difficulty, and rarely seizures after CAR-T or bispecific therapy.
- Deauville score and PET-adapted therapy: A 1-to-5 scale for how brightly a lymphoma lights up on a PET scan, compared with the liver and the middle of the chest.
- Deauville five-point scale: A 1-to-5 score for how bright a lymphoma looks on PET compared with the liver; 1-3 is considered a complete metabolic response.
- Cell of origin (GCB vs ABC): Whether a large B-cell lymphoma resembles a germinal-centre B cell or an activated B cell; the activated type does worse and depends on different pathways.
- Lymphoma (tissue type): Cancer of lymphocytes, the white blood cells of the immune system, usually growing as masses in lymph nodes, spleen or other organs.
- B cell: The immune cells that make antibodies.
Tests and results to bring
Biomarker results to ask for: Cell of origin (GCB/ABC), Double-hit (MYC/BCL2), CD19/CD20, ctDNA MRD, IPI / NCCN-IPI, Cell of origin (Hans IHC, Lymph2Cx), MYC, BCL2, BCL6 FISH, TP53 mutation, CD19 and CD20 expression (loss after CAR-T or bispecific), Interim and end-of-treatment PET (Deauville), ctDNA (PhasED-seq, clonoSEQ), LDH, CNS-IPI for CNS prophylaxis decisions.
Scans and tests linked to this cancer: FDG PET, NGS-based MRD (clonoSEQ and molecular MRD), PET-adapted (response-adapted) therapy, G8 geriatric screening tool, MRD / molecular residual disease testing, Strain echocardiography (global longitudinal strain).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Limited stage (I-II, non-bulky): R-CHOP × 4 with PET-guided omission of radiation (FLYER, S1001): 4 cycles if interim PET negative; involved-site radiotherapy if PET positive. (Doxorubicin, FDG PET, IMRT / IGRT (modern external beam), Lugano classification / Ann Arbor staging)
- Frontline: R-CHOP or Pola-R-CHP.
- Advanced stage, IPI 0-1: R-CHOP × 6 (or Pola-R-CHP); consider 4 cycles plus 2 rituximab in young low-risk patients (FLYER). (Doxorubicin, Polatuzumab vedotin, International Prognostic Index (IPI))
- Advanced stage, IPI 2-5: Pola-R-CHP × 6 (POLARIX) or R-CHOP × 6; tafasitamab + lenalidomide + R-CHOP (frontMIND) pending approval for IPI 3-5; DA-EPOCH-R for double-hit lymphoma; CNS prophylaxis for high CNS-IPI (contested). (POLARIX, Polatuzumab vedotin, frontMIND, Tafasitamab, Double-hit / high-grade B-cell lymphoma)
- Frail or elderly: R-mini-CHOP; epcoritamab-based regimens in trials for the elderly (EPCORE NHL-2 cohorts); tafasitamab-lenalidomide where transplant is never an option. (Epcoritamab, Tafasitamab, Lenalidomide)
- Early relapse: CD19 CAR-T. (Axicabtagene ciloleucel)
- Later: CD20×CD3 bispecifics, loncastuximab, tafasitamab. (Glofitamab, Loncastuximab tesirine)
- Primary refractory or relapse within 12 months: CD19 CAR-T (axi-cel or liso-cel) preferred over salvage chemotherapy and transplant (ZUMA-7, TRANSFORM); bridging therapy while manufacturing; bispecific ± chemotherapy if CAR-T unavailable. (Axicabtagene ciloleucel, ZUMA-7, TRANSFORM, CAR-T cell therapy)
- Late relapse (>12 months), transplant-eligible: Salvage chemotherapy (R-ICE, R-DHAP, R-GemOx) → high-dose therapy and autologous transplant if chemosensitive; CAR-T if not. (Autologous stem cell transplant (high-dose therapy), CAR-T cell therapy)
- Relapse, transplant-ineligible: CD20×CD3 bispecific (glofitamab, epcoritamab) or mosunetuzumab-polatuzumab (SUNMO); pola-BR; tafasitamab-lenalidomide; loncastuximab tesirine. (Glofitamab, Epcoritamab, Mosunetuzumab, Polatuzumab vedotin, Tafasitamab, Loncastuximab tesirine, SUNMO)
- Third line and beyond: CAR-T if not yet given; bispecific after CAR-T (active in CD19-negative relapse if CD20 retained); loncastuximab; zilovertamab vedotin (trial); allogeneic transplant in selected fit patients; clinical trials. (Axicabtagene ciloleucel, Glofitamab, Epcoritamab, Loncastuximab tesirine, Zilovertamab vedotin, waveLINE-003)
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