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Living with cancer· Appointment prep

Appointment sheet: Post-transplant lymphoproliferative disorder (PTLD)

One page to bring and write on: your details, the questions for Post-transplant lymphoproliferative disorder (PTLD) 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

Post-transplant lymphoproliferative disorder (PTLD)

Prepared with OnCo (onco.cc/prep/post-transplant-lymphoproliferative-disorder/). 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

15 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 EBV status of tumourand plasma EBV DNA load, CD20 expression, Recipient EBV serostatus at transplant, Type and intensity of immunosuppression, LDH, stage, performance status and graft involvement), 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?
All PTLD, first step
  1. 5.For my situation (all ptld, first step), which of the standard options do you recommend and why?
CD20-positive PTLD not responding to reduced immunosuppression
  1. 6.For my situation (cd20-positive ptld not responding to reduced immunosuppression), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Rituximab, Cyclophosphamide, Doxorubicin or related drugs, and what side effects should I expect?
EBV-positive, relapsed or refractory
  1. 8.For my situation (ebv-positive, relapsed or refractory), which of the standard options do you recommend and why?
After allogeneic HSCT, high risk
  1. 9.For my situation (after allogeneic hsct, high risk), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Rituximab, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Allogeneic (off-the-shelf) cell therapy, Rituximab, Glofitamab, Epcoritamab?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Rituximab-refractory and EBV-negative PTLD have poor outcomes; EBV-specific T cells, CAR-T and bispecific antibodies are the routes being tested”. How does that affect my plan?
  5. 15.I read that “US access to tabelecleucel awaits FDA resolution of manufacturing findings; academic virus-specific T-cell banks fill the gap”. How does that affect my plan?

The words I may hear

  • Graft-versus-host disease (GVHD) and graft-versus-leukaemia: After a donor transplant, the donor's immune cells may attack the patient's skin, gut and liver (graft-versus-host disease) while also hunting down leftover leukaemia (graft-versus-leukaemia).
  • Plasma EBV DNA: Fragments of Epstein-Barr virus DNA in the blood that measure nasopharyngeal carcinoma: used to screen healthy people in endemic regions, to stage, to decide who needs extra treatment after radiotherapy, and to detect relapse.
  • Allogeneic stem cell transplant (allo-SCT): Replacing a patient's blood system with a donor's: chemotherapy wipes out the marrow, donor stem cells rebuild it, and the donor's immune cells hunt down leftover leukaemia.
  • 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: EBV status of tumour (EBER in situ hybridisation) and plasma EBV DNA load, CD20 expression (rituximab eligibility), Recipient EBV serostatus at transplant, Type and intensity of immunosuppression, LDH, stage, performance status and graft involvement (prognostic index), HLA type (for matched EBV-specific T-cell products).

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