The first 60 days: Follicular lymphoma
Follicular lymphoma is the most common slow-growing lymphoma, defined in about 85% of cases by a BCL2 translocation. Most people live with it for decades, treated only when it causes problems; it can be controlled repeatedly with anti-CD20 antibodies, chemotherapy, bispecifics or CAR-T but rarely cured, and a small share transform into an aggressive lymphoma each year. Below, week by week, is what OnCo's record of Follicular lymphoma says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Advanced, low burden, asymptomatic.
- SurgeonNamed in the standard of care for: Advanced, low burden, asymptomatic.
- Medical oncologistNamed in the standard of care for: Limited stage (I-II), Advanced, low burden, asymptomatic, Advanced, high burden (GELF criteria), Relapsed (≥2 lines).
- Clinical oncologist (radiotherapy)Named in the standard of care for: Limited stage (I-II).
- Transplant and cell therapy teamNamed in the standard of care for: Relapsed (≥2 lines).
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Involved-site radiotherapy 24 Gy (FoRT); rituximab alone or observation in selected cases.
Watch and wait (no survival penalty), or rituximab monotherapy to delay chemotherapy.
- 3.Advanced, high burden (GELF criteria)NCCN category Category 1, ESMO-MCBS 3 (GALLIUM), NCCN Guidelines: B-Cell Lymphomas
Bendamustine-rituximab or bendamustine-obinutuzumab (GALLIUM), R-CHOP, or lenalidomide-rituximab (RELEVANCE); anti-CD20 maintenance 2 years (PRIMA).
Lenalidomide-rituximab (AUGMENT); CD20×CD3 bispecific (mosunetuzumab, epcoritamab); CD19 CAR-T (axi-cel, tisa-cel, liso-cel); zanubrutinib + obinutuzumab; clinical trials.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example t/BCL2, FLIPI / FLIPI2 / m7-FLIPI, PET-CTstaging and end-of-induction response, POD24, EZH2 mutation), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Classic FL, Follicular large B-cell lymphoma, FL with unusual cytological features.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Limited stage (I-II)
- For my situation (limited stage (i-ii)), which of the standard options do you recommend and why?Guideline options include: Involved-site radiotherapy 24 Gy (FoRT); rituximab alone or observation in selected cases.
- Am I a candidate for Rituximab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Advanced, low burden, asymptomatic
- For my situation (advanced, low burden, asymptomatic), which of the standard options do you recommend and why?Guideline options include: Watch and wait (no survival penalty), or rituximab monotherapy to delay chemotherapy.
- Am I a candidate for Rituximab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Advanced, high burden (GELF criteria)
- For my situation (advanced, high burden (gelf criteria)), which of the standard options do you recommend and why?Guideline options include: Bendamustine-rituximab or bendamustine-obinutuzumab (GALLIUM), R-CHOP, or lenalidomide-rituximab (RELEVANCE); anti-CD20 maintenance 2 years (PRIMA).
- Am I a candidate for Rituximab, Obinutuzumab, Bendamustine or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Relapsed (≥2 lines)
- For my situation (relapsed (≥2 lines)), which of the standard options do you recommend and why?Guideline options include: Lenalidomide-rituximab (AUGMENT); CD20×CD3 bispecific (mosunetuzumab, epcoritamab); CD19 CAR-T (axi-cel, tisa-cel, liso-cel); zanubrutinib + obinutuzumab; clinical trials.
- Am I a candidate for Mosunetuzumab, Epcoritamab, Axicabtagene ciloleucel or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Epcoritamab, Mosunetuzumab, Odronextamab, Golcadomide?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Transformation to DLBCL cannot be predicted or prevented”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Sequencing bispecifics vs CAR-T”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
- A Long-term Extension Study of PCI-32765 (Ibrutinib)Phase 3 · recruiting · NCT01804686PCI-32765CAN3001: A Phase 3b, Multicenter, Open-label, PCI-32765 (Ibrutinib) Long-term Extension Study
- A Phase 3 Study to Assess Efficacy and Safety of Tafasitamab Plus Lenalidomide and Rituximab Compared to Placebo Plus Lenalidomide and Rituximab in PaPhase 3 · active · NCT04680052A Phase 3, Randomized, Double-Blind, Placebo-Controlled, Multicenter Study to Evaluate the Efficacy and Safety of Tafasitamab Plus Lenalidomide in Addition to Rituximab Versus Lenalidomide in Addition to Rituximab in Patients With Relapsed/Refractory (R/R) Follicular Lymphoma Grade 1 to 3a or R/R Marginal Zone Lymphoma
- A Phase III Trial Comparing Tisagenlecleucel to Standard of Care (SoC) in Adult Participants With r/r Follicular LymphomaPhase 3 · active · NCT05888493A Randomized, Open-label, Multi-center Phase III Trial Comparing Tisagenlecleucel to Standard of Care in Adult Participants With Relapsed or Refractory Follicular Lymphoma (FL)
- A Study Evaluating the Efficacy and Safety of Mosunetuzumab in Combination With Lenalidomide in Comparison to Rituximab in Combination With LenalidomiPhase 3 · active · NCT04712097Phase III Randomized, Open-Label, Multicenter Study Evaluating Efficacy and Safety of Mosunetuzumab in Combination With Lenalidomide in Comparison to Rituximab in Combination With Lenalidomide With a Non-Randomized Single Arm US Extension of Mosunetuzumab in Combination With Lenalidomide in Patients With Follicular Lymphoma After at Least One Line of Systemic Therapy
- A Study of Surovatamig (AZD0486) Plus Rituximab in Previously Untreated Follicular Lymphoma PatientsPhase 3 · recruiting · NCT06549595A Phase III, Multicentre, Randomised, Open-label Study to Compare the Efficacy and Safety of AZD0486 Plus Rituximab Versus Chemotherapy Plus Rituximab in Previously Untreated Participants With Follicular Lymphoma (SOUNDTRACK-F1)
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Follicular lymphoma: the full pageFollicular lymphoma is the most common slow-growing lymphoma, defined in about 85% of cases by a BCL2 translocation. Most people live with it for decades, treated only when it causes problems; it can be controlled repeatedly with anti-CD20 antibodies, chemotherapy, bispecifics or CAR-T but rarely cured, and a small share transform into an aggressive lymphoma each year.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
- Histologic transformation: When a lung adenocarcinoma escapes targeted therapy by turning into a different cell type, usually small-cell.
- Lugano classification / Ann Arbor staging: The Lugano classification is the lymphoma staging system: stage I to IV by how many lymph node regions and organs are involved, with PET-based response criteria.
Every term links to the glossary.