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Living with cancer· Appointment prep

Appointment sheet: HIV-associated (AIDS-related) lymphomas

One page to bring and write on: your details, the questions for HIV-associated (AIDS-related) lymphomas plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

HIV-associated (AIDS-related) lymphomas

Prepared with OnCo (onco.cc/prep/hiv-associated-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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

19 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.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?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
HIV-associated DLBCL
  1. 5.For my situation (hiv-associated dlbcl), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Rituximab, Cyclophosphamide, Doxorubicin or related drugs, and what side effects should I expect?
HIV-associated Burkitt lymphoma
  1. 7.For my situation (hiv-associated burkitt lymphoma), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Rituximab, Methotrexate, Cyclophosphamide or related drugs, and what side effects should I expect?
Primary effusion and plasmablastic lymphoma
  1. 9.For my situation (primary effusion and plasmablastic lymphoma), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Bortezomib, Daratumumab, Pomalidomide or related drugs, and what side effects should I expect?
Relapsed or refractory
  1. 11.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Axicabtagene ciloleucel, Glofitamab, Epcoritamab, and what side effects should I expect?
HIV-associated Hodgkin lymphoma
  1. 13.For my situation (hiv-associated hodgkin lymphoma), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Brentuximab vedotin, Doxorubicin, Bleomycin, and what side effects should I expect?
Any stage
  1. 15.Are there clinical trials I could join, for example of CAR-T cell therapy, Glofitamab, Epcoritamab, Daratumumab?
  2. 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 18.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?
  5. 19.I read that “Plasmablastic lymphoma lacks CD20 and relapses early; bortezomib and daratumumab combinations are being tested”. How does that affect my plan?

The words I may hear

  • 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.

Tests and results to bring

Biomarker results to ask for: CD4 count and HIV viral load at diagnosis, EBV (EBER) and HHV-8 (LANA) in tumour tissue, CD20 expression (rituximab eligibility; absent in plasmablastic and often in PEL), MYC, BCL2, BCL6 rearrangements (Burkitt vs double-hit), CSF EBV DNA and cytology (CNS involvement), Antiretroviral regimen and interaction profile.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

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 browser
What I was told
Agreed next steps, dates and who to call