The first 60 days: HIV-associated (AIDS-related) lymphomas
People living with HIV have a raised risk of aggressive lymphomas, driven by immune suppression and viruses such as Epstein-Barr virus. The transformation of the last two decades is that, with antiretroviral therapy continued through treatment, these lymphomas are treated with the same full-dose chemotherapy and antibody regimens as in anyone else, with similar chances of cure. Below, week by week, is what OnCo's record of HIV-associated (AIDS-related) lymphomas 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.
- SurgeonNamed in the standard of care for: HIV-associated Hodgkin lymphoma.
- Medical oncologistNamed in the standard of care for: HIV-associated DLBCL, HIV-associated Burkitt lymphoma, Primary effusion and plasmablastic lymphoma, Relapsed or refractory and 1 more.
- Transplant and cell therapy teamNamed in the standard of care for: HIV-associated DLBCL, HIV-associated Burkitt lymphoma, Primary effusion and plasmablastic lymphoma, Relapsed or refractory.
- Palliative and supportive care teamNamed in the standard of care for: HIV-associated DLBCL, HIV-associated Hodgkin lymphoma.
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.
- 1.HIV-associated DLBCLNCCN category Category 2A, NCCN Guidelines: B-Cell Lymphomas (AIDS-related B-cell lymphomas); AMC 034 (Blood 2010)
R-CHOP or dose-adjusted EPOCH-R at full dose with concurrent antiretroviral therapy (avoiding boosted protease inhibitors or cobicistat where possible), G-CSF support and opportunistic-infection prophylaxis; CNS prophylaxis by risk.
Intensive Burkitt regimens (CODOX-M/IVAC with rituximab) in fit patients, or DA-EPOCH-R (low-intensity variant studied in HIV); intrathecal prophylaxis.
CHOP or EPOCH-based chemotherapy with antiretroviral therapy; bortezomib-containing regimens for plasmablastic; clinical trials (pomalidomide, daratumumab, anti-IL-6).
ABVD or brentuximab-based regimens as for the general population, with antiretroviral therapy.
Salvage chemotherapy and autologous transplant (feasible with controlled HIV; BMT CTN 0803); CD19 CAR-T on the same criteria as HIV-negative patients; bispecific antibodies emerging.
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 CD4 count and HIV viral load at diagnosis, EBVand HHV-8in tumour tissue, CD20 expression, MYC, BCL2, BCL6 rearrangements, CSF EBV DNA and cytology), 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 Diffuse large B-cell lymphoma, Burkitt lymphoma, Primary effusion lymphoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
HIV-associated DLBCL
- For my situation (hiv-associated dlbcl), which of the standard options do you recommend and why?Guideline options include: R-CHOP or dose-adjusted EPOCH-R at full dose with concurrent antiretroviral therapy (avoiding boosted protease inhibitors or cobicistat where possible), G-CSF support and opportunistic-infection prophylaxis; CNS prophylaxis by risk.
- Am I a candidate for Rituximab, Cyclophosphamide, Doxorubicin or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
HIV-associated Burkitt lymphoma
- For my situation (hiv-associated burkitt lymphoma), which of the standard options do you recommend and why?Guideline options include: Intensive Burkitt regimens (CODOX-M/IVAC with rituximab) in fit patients, or DA-EPOCH-R (low-intensity variant studied in HIV); intrathecal prophylaxis.
- Am I a candidate for Rituximab, Methotrexate, Cyclophosphamide or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Primary effusion and plasmablastic lymphoma
- For my situation (primary effusion and plasmablastic lymphoma), which of the standard options do you recommend and why?Guideline options include: CHOP or EPOCH-based chemotherapy with antiretroviral therapy; bortezomib-containing regimens for plasmablastic; clinical trials (pomalidomide, daratumumab, anti-IL-6).
- Am I a candidate for Bortezomib, Daratumumab, Pomalidomide or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Relapsed or refractory
- For my situation (relapsed or refractory), which of the standard options do you recommend and why?Guideline options include: Salvage chemotherapy and autologous transplant (feasible with controlled HIV; BMT CTN 0803); CD19 CAR-T on the same criteria as HIV-negative patients; bispecific antibodies emerging.
- Am I a candidate for Axicabtagene ciloleucel, Glofitamab, Epcoritamab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
HIV-associated Hodgkin lymphoma
- For my situation (hiv-associated hodgkin lymphoma), which of the standard options do you recommend and why?Guideline options include: ABVD or brentuximab-based regimens as for the general population, with antiretroviral therapy.
- Am I a candidate for Brentuximab vedotin, Doxorubicin, Bleomycin, 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 CAR-T cell therapy, Glofitamab, Epcoritamab, Daratumumab?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 “Primary effusion lymphoma and multicentric Castleman disease respond poorly to chemotherapy; pomalidomide, anti-IL-6 and HHV-8-directed approaches are in AMC trials”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Plasmablastic lymphoma lacks CD20 and relapses early; bortezomib and daratumumab combinations are being tested”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- HIV-associated (AIDS-related) lymphomas: the full pagePeople living with HIV have a raised risk of aggressive lymphomas, driven by immune suppression and viruses such as Epstein-Barr virus. The transformation of the last two decades is that, with antiretroviral therapy continued through treatment, these lymphomas are treated with the same full-dose chemotherapy and antibody regimens as in anyone else, with similar chances of cure.
- 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.
- 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.
- 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.
- Intrathecal therapy (lumbar puncture, Ommaya reservoir): Giving drugs directly into the fluid around the brain and spinal cord, by needle in the lower back or through a small reservoir under the scalp, because most drugs cannot cross from the blood into that space.
- Epstein-Barr virus (EBV) in cancer: The common glandular-fever virus, carried lifelong by most adults, which in a minority of people drives nasopharyngeal cancer, some stomach cancers and several lymphomas.
Every term links to the glossary.