Non-Hodgkin lymphoma (all types)
Prepared with OnCo (onco.cc/prep/non-hodgkin-lymphoma/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
29 on the sheet- 1.Who is my clinical nurse specialist, and what is the number to ring at two in the morning?
- 2.Exactly which lymphoma is this, is it fast-growing or slow-growing, and what stage is it?
- 3.Has the biopsy been reviewed by a specialist lymphoma pathologist, and is the sample big enough for all the tests?
- 4.How long will the results take, and what happens in the meantime?
- 5.Has my case been to the multidisciplinary team meeting, and how will I hear what was agreed?
- 6.Will this treatment affect my fertility, and can I see a fertility specialist before it starts?
- 7.Which vaccinations should I have before treatment starts, and which must I not have?
- 8.Will I need a port or a PICC line, and when would it go in?
- 9.Which of the things on this list decide my treatment: the subtype, the stage, my prognostic score, my fitness, or something else?
- 10.Does my lymphoma need treating now, or is monitoring a reasonable option for me?
- 11.What is my stage, and does it change what you would offer?
- 12.Am I at risk of tumour lysis syndrome, and what is being given to prevent it?
- 13.Have I been tested for hepatitis B, and will I need an antiviral alongside the antibody treatment?
- 14.Will I be given growth factor injections, and what are they for?
- 15.What preventive antibiotics or antivirals am I on, and for how long after treatment finishes?
- 16.Is the treatment you are recommending the one used in the United Kingdom, and is there a different standard elsewhere?
- 17.Is there anything that is commonly done for this lymphoma that you are deliberately not doing, and why?
- 18.Is there a clinical trial open to me, here or at another hospital, and would you refer me?
- 19.What is the aim of this treatment: to cure the lymphoma, or to control it?
- 20.What should make me ring you rather than wait for the next appointment?
- 21.How many days do I actually have before treatment must start?
- 22.Will I be referred to a fertility clinic on the NHS, and is there an age limit here?
- 23.Should I plan to work through this, and what should I tell my employer?
- 24.Who here can go through sick pay and benefits with me, and can I be referred now rather than later?
- 25.Can I have my treatment summary in writing, for me and for my general practitioner?
- 26.Will I be having regular scans in follow-up, and if not, why not?
- 27.What are the late effects of the treatment I had, and what screening follows from them?
- 28.What should I watch for at home, and at what point do I ring rather than wait?
- 29.Can I have a carer's assessment, and what help is there for me?
The words I may hear
- FLIPI, FLIPI2 and POD24 (follicular lymphoma risk): FLIPI counts five simple things (age over 60, stage III or IV, more than four node areas, raised LDH, low haemoglobin) to predict how a follicular lymphoma will behave; POD24, relapse within two years of starting chemo-immunotherapy, is the single strongest sign of a dangerous one.
- MIPI (Mantle Cell Lymphoma International Prognostic Index): MIPI turns age, performance status, LDH and white cell count into a low, intermediate or high-risk label for mantle cell lymphoma, and adding Ki-67 (MIPI-c) or TP53 status sharpens it; high-risk and TP53-mutated disease is where chemotherapy alone fails and BTK inhibitors, CAR-T and trials come in first.
- HTLV-1, Tax and HBZ in adult T-cell leukaemia/lymphoma: A virus passed mostly from mother to child in breast milk, common in parts of Japan, the Caribbean, west Africa and South America.
- POD24: progression of follicular lymphoma within two years, and why it changes the plan: Most follicular lymphoma comes back slowly and is treated again without much loss of life expectancy.
- Breast cancer after chest radiotherapy given young: This is the second cancer with a real screening programme attached, and the one most worth asking about by name.
- The UK very high risk breast screening protocol after chest radiotherapy: England runs a named screening programme for women who had radiotherapy to breast tissue when young, with exact ages and tests set out in its own documents.
- Cell of origin in practice: Hans against expression profiling, and what it changes: Large B-cell lymphoma is split into two types by which normal B cell it most resembles.
- Bladder cancer after cyclophosphamide: Cyclophosphamide is one of the few cancer drugs that has been shown to cause a specific solid cancer, in the bladder, and the risk depends steeply on the total dose given.
- Escalated chemotherapy or ABVD in advanced Hodgkin lymphoma: more cures, more late harm, and what the interim scan changed: Advanced Hodgkin lymphoma can be treated with a gentler combination that fewer people are cured by first time, or a harder one that cures more but leaves more lasting harm.
- Transplant or CAR-T at second line in diffuse large B-cell lymphoma: If a large B-cell lymphoma comes back within a year of first treatment, two trials found that engineered T cells worked better than salvage chemotherapy followed by a transplant of the person's own stem cells, and a third trial of a different T-cell product found no difference.
Tests and results to bring
Biomarker results to ask for: Immunophenotype (CD20, CD5, CD10, CD30 and others) that assigns the subtype, MYC, BCL2 and BCL6 rearrangements (high-grade B-cell lymphoma), Ki-67 proliferation index, Interim and end-of-treatment PET (Deauville score), Cell of origin (germinal centre versus activated B-cell) in DLBCL, Cell of origin in large B-cell lymphoma: germinal-centre-like or non-germinal-centre, by the Hans three-stain algorithm or by expression profiling, MYC, BCL2 and BCL6 rearrangement by FISH: 8.8%, 13.5% and 28.7% of 442 unselected diffuse large B-cell lymphomas, MYD88 L265P: 29% of activated B-cell-like diffuse large B-cell lymphoma, 91% of lymphoplasmacytic lymphoma, CD79B ITAM mutation: 18% of activated B-cell-like diffuse large B-cell lymphoma, EZH2 Tyr646 gain-of-function mutation: 7.2% of follicular lymphoma, 21.7% of germinal-centre diffuse large B-cell lymphoma, CREBBP or EP300 inactivation: about 39% of diffuse large B-cell lymphoma, 41% of follicular lymphoma, TP53 mutation in mantle cell lymphoma: 11%, with median overall survival of 1.8 years against 12.7 years, RHOA G17V: 67 to 68% of angioimmunoblastic T-cell lymphoma, 18% of peripheral T-cell lymphoma not otherwise specified, 9p24.1 alteration of the PD-1 ligand loci: 97% of 108 classical Hodgkin lymphomas, CIITA rearrangement: 38% of primary mediastinal B-cell lymphoma, 15% of classical Hodgkin lymphoma, t(11;18) API2-MALT1 in gastric MALT lymphoma: predicts failure of Helicobacter eradication, Immunoglobulin and T-cell receptor clonality: clonal, polyclonal or oligoclonal, read with the morphology and never alone, Deauville five-point score on interim and end-of-treatment PET, The immunophenotype, read by immunohistochemistry or flow cytometry (CD20, CD3, CD5, CD10, CD23, CD30, CD138, cyclin D1, ALK, BCL2, BCL6, MUM1), which assigns the entity and is the diagnosis, MYC, BCL2 and BCL6 rearrangements by fluorescence in situ hybridisation in every aggressive B-cell lymphoma, because MYC with BCL2 defines a separate entity, The Ki-67 proliferation index, which is above 95 per cent in Burkitt lymphoma and is part of the mantle cell risk score, Cell of origin in diffuse large B-cell lymphoma: germinal centre B-cell against activated B-cell, Epstein-Barr virus by EBER in situ hybridisation, which defines several entities and changes none of the treatment, Interim and end-of-treatment PET-CT, scored on the Deauville five-point scale, MYD88 L265P, which supports lymphoplasmacytic lymphoma and the immune-privileged large B-cell lymphomas, HTLV-1 serology where the person or their family comes from Japan, the Caribbean, west or central Africa, Iran, Romania or parts of South America.
Scans and tests linked to this cancer: Comprehensive genomic profiling, Cytogenetics and FISH, FDG PET, Flow cytometers, Histopathology & immunohistochemistry, Liquid biopsy (ctDNA).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Aggressive B-cell (DLBCL and related): Curative immunochemotherapy (R-CHOP or Pola-R-CHP); CAR-T or bispecific antibodies at relapse. See the DLBCL page. (Rituximab, Polatuzumab vedotin)
- Indolent B-cell (follicular, marginal zone): Watch and wait when asymptomatic; rituximab alone or with bendamustine or CHOP when treatment is needed; bispecifics and CAR-T for later relapses. See the follicular lymphoma page. (Rituximab, Bendamustine)
- Mantle cell lymphoma and CLL: BTK inhibitors and venetoclax-based regimens have largely replaced chemotherapy. See the mantle cell and CLL pages. (Ibrutinib, Venetoclax)
- T-cell lymphomas: CHOP-based chemotherapy, brentuximab vedotin for CD30-positive disease, transplant in first remission for fit patients. See the peripheral T-cell lymphoma page. (Brentuximab vedotin)
- How the treatment of a non-Hodgkin lymphoma is decided: Three questions, in order. Is it aggressive or indolent? Aggressive lymphomas (diffuse large B-cell, high-grade B-cell, Burkitt, most T-cell lymphomas, blastoid mantle cell) are treated immediately, with combination chemotherapy, with the intention to cure. Indolent lymphomas (follicular, marginal zone, lymphoplasmacytic) may not need treatment at all for years, and when they do the aim is control rather than cure. Is it a B-cell or a T-cell lymphoma? B-cell lymphomas carry CD20 and almost all first-line regimens contain an anti-CD20 antibody; T-cell lymphomas do not, which is the main reason their outcomes lag. Where is it, and what does it threaten? A lymphoma in the stomach, the brain, the testis, the eye or the skin is treated by rules specific to that site, not by the rules for nodal disease. The things that must be done before the first dose are the same across the family: a proper biopsy reported to the current WHO classification, PET-CT staging reported by the Lugano classification, hepatitis B and HIV testing, and a fertility conversation. (Lymphoma (tissue type), Lugano classification / Ann Arbor staging, FDG PET, The lymphoma regimen alphabet: R-CHOP, pola-R-CHP, DA-EPOCH-R, ABVD, BEACOPP and the rest, Watch and wait in lymphoma: when the right treatment is none yet, Hepatitis B reactivation before rituximab and other anti-CD20 antibodies, Fertility before lymphoma treatment: what to ask for, and when)
- Where British and American practice differ: In advanced Hodgkin lymphoma, the United States moved to nivolumab with AVD after SWOG S1826 while Germany moved to PET-guided BrECADD after HD21 and British practice sits between the two. In older mantle cell lymphoma, the British-led ENRICH trial made ibrutinib with rituximab a first-line option without chemotherapy, with the benefit concentrated against R-CHOP rather than against bendamustine-rituximab. In first-line diffuse large B-cell lymphoma, pola-R-CHP is the American default for IPI 2 and above while R-CHOP remains the commonest first treatment in England. Central nervous system prophylaxis has been dropped faster in the United Kingdom than in the United States. Access to bispecific antibodies and CAR-T exists in both countries by different routes: national commissioning and panel approval in England, insurance authorisation at an accredited centre in the United States. (British and American lymphoma practice: where they differ, and why, What the NHS in England funds for lymphoma, appraisal by appraisal, SWOG S1826, GHSG HD21, POLARIX, TRIANGLE)
- Treatments that did not work, and are worth not being offered: DA-EPOCH-R as a general upgrade to R-CHOP failed in Alliance/CALGB 50303. Obinutuzumab in place of rituximab in diffuse large B-cell lymphoma failed in GOYA, although it works in follicular lymphoma in GALLIUM. Lenalidomide maintenance after R-CHOP lengthened progression-free survival but not life in REMARC. Tisagenlecleucel in second line failed in BELINDA while two other CAR-T products succeeded in the same setting. Four gray in two fractions is inferior to 24 gray for curative radiotherapy of indolent lymphoma in FoRT. Central nervous system prophylaxis did not lower central nervous system relapse below the rate predicted by CNS-IPI in the largest cohort that received it. (Lymphoma treatments that did not work: the negative trials worth knowing, BELINDA, GALLIUM, CNS prophylaxis in aggressive B-cell lymphoma, and the evidence against it, Maintenance and consolidation in lymphoma: where it works and where it does not, Radiotherapy in lymphoma: involved-site fields, 24 Gy, 4 Gy and total skin electron therapy)
- Supportive care that belongs to lymphoma specifically: Five things, each with its own entry. Tumour lysis syndrome: predictable from bulk, LDH and histology, prevented with fluids, allopurinol and, in high-risk patients, rasburicase; screen for glucose-6-phosphate dehydrogenase deficiency first. Hepatitis B reactivation: test surface antigen and core antibody before any anti-CD20 antibody and give entecavir or tenofovir prophylaxis, which in a randomised trial cut reactivation from 30 to 6.6 per cent against lamivudine. Pneumocystis and herpes prophylaxis with steroid-containing, purine-analogue, PI3K-inhibitor, CAR-T and bispecific regimens. Immunoglobulin replacement for those left with low IgG and recurrent infection after B-cell depletion. Cytokine release syndrome and ICANS after CAR-T and bispecific antibodies, graded by the ASTCT criteria and treated with tocilizumab and steroids. Fertility preservation before alkylating chemotherapy, arranged in days rather than weeks. (Tumour lysis syndrome in lymphoma: who is at risk, and rasburicase, Hepatitis B reactivation before rituximab and other anti-CD20 antibodies, Infection prophylaxis in lymphoma: PJP, herpes, fungal risk and vaccination, Immunoglobulin replacement after CAR-T, bispecifics and long anti-CD20 treatment, Cytokine release syndrome and ICANS: grading and management, Fertility before lymphoma treatment: what to ask for, and when, Rasburicase, Tocilizumab, Human normal immunoglobulin (IVIg))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.