Appointment sheet
Mantle cell lymphoma
Prepared with OnCo (onco.cc/prep/mantle-cell-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
17 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example t/ cyclin D1 IHC, SOX11, MIPI and MIPI-c, Ki-67, TP53 mutation / del), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
First line, fit (<65-70)
- 5.For my situation (first line, fit (<65-70)), which of the standard options do you recommend and why?
- 6.Am I a candidate for Rituximab, Ibrutinib, and what side effects should I expect?
First line, older or unfit
- 7.For my situation (first line, older or unfit), which of the standard options do you recommend and why?
- 8.Am I a candidate for Bendamustine, Rituximab, Acalabrutinib, and what side effects should I expect?
Relapsed, BTKi-naive
- 9.For my situation (relapsed, btki-naive), which of the standard options do you recommend and why?
- 10.Am I a candidate for Acalabrutinib, Zanubrutinib, Ibrutinib or related drugs, and what side effects should I expect?
Relapsed after BTKi
- 11.For my situation (relapsed after btki), which of the standard options do you recommend and why?
- 12.Am I a candidate for Brexucabtagene autoleucel, Lisocabtagene maraleucel, Pirtobrutinib or related drugs, and what side effects should I expect?
Any stage
- 13.Are there clinical trials I could join, for example of Sonrotoclax, Glofitamab, Pirtobrutinib, Venetoclax?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “TP53-mutant and blastoid MCL fail chemo-immunotherapy; need CAR-T or bispecific-based first-line trials”. How does that affect my plan?
- 17.I read that “MRD-guided treatment duration”. How does that affect my plan?
The words I may hear
- del(17p) / TP53 aberration in CLL: A del(17p) deletion or TP53 mutation means loss or damage of the p53 safety gene in CLL.
- 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.
- Minimal / molecular residual disease (MRD): Cancer still present after treatment but too small to see on scans, detected by blood or marrow tests.
Tests and results to bring
Biomarker results to ask for: t(11;14) / cyclin D1 IHC, SOX11, MIPI and MIPI-c, Ki-67 (≥30% high risk), TP53 mutation / del(17p), Blastoid morphology, MRD (ctDNA/clonoSEQ, investigational).
Scans and tests linked to this cancer: NGS-based MRD (clonoSEQ and molecular MRD), MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- First line, fit (<65-70): Rituximab + high-dose cytarabine-based induction (e.g. R-CHOP/R-DHAP or Nordic) with ibrutinib and 2 years ibrutinib maintenance; autologous transplant no longer adds benefit when ibrutinib is used (TRIANGLE). (Rituximab, Ibrutinib, Autologous stem cell transplant (high-dose therapy))
- First line, older or unfit: Bendamustine-rituximab + acalabrutinib (ECHO, approved 2025) or BR alone with rituximab maintenance; R-CHOP alternative. (Bendamustine, Rituximab, Acalabrutinib)
- Relapsed, BTKi-naive: Covalent BTK inhibitor (acalabrutinib, zanubrutinib; ibrutinib ex-US) ± venetoclax (SYMPATICO). (Acalabrutinib, Zanubrutinib, Ibrutinib, Venetoclax)
- Relapsed after BTKi: Brexucabtagene or lisocabtagene CAR-T; pirtobrutinib; sonrotoclax (2026); allogeneic HSCT in selected patients; bispecific trials. (Brexucabtagene autoleucel, Lisocabtagene maraleucel, Pirtobrutinib, Sonrotoclax, Allogeneic stem cell transplantation)
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 browserWhat I was told
Agreed next steps, dates and who to call