Appointment sheet
Chronic lymphocytic leukaemia, first treatment
Prepared with OnCo (onco.cc/prep/cll-treatment-naive/). 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
18 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 delby FISH and TP53 mutation, IGHV mutational status, CLL-IPI score, Beta-2 microglobulin, Complex karyotype), 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?
Asymptomatic early-stage disease
- 5.For my situation (asymptomatic early-stage disease), which of the standard options do you recommend and why?
First treatment, fixed duration
- 6.For my situation (first treatment, fixed duration), which of the standard options do you recommend and why?
- 7.Am I a candidate for Venetoclax, Obinutuzumab, Ibrutinib or related drugs, and what side effects should I expect?
- 8.How do the results of CLL14 and CLL13 / GAIA apply to someone like me?
First treatment, continuous
- 9.For my situation (first treatment, continuous), which of the standard options do you recommend and why?
- 10.Am I a candidate for Acalabrutinib, Zanubrutinib, Ibrutinib, and what side effects should I expect?
- 11.How do the results of ELEVATE-TN and SEQUOIA apply to someone like me?
Chemoimmunotherapy
- 12.For my situation (chemoimmunotherapy), which of the standard options do you recommend and why?
- 13.Am I a candidate for Fludarabine, Cyclophosphamide, Rituximab or related drugs, and what side effects should I expect?
Any stage
- 14.Are there clinical trials I could join, for example of Sonrotoclax, Nemtabrutinib, CELESTIAL-TNCLL, CaDAnCe-304?
- 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 17.I read that “Continuous BTK inhibitor or fixed-duration venetoclax first: no head-to-head survival data”. How does that affect my plan?
- 18.I read that “Whether MRD should decide how long fixed-duration therapy lasts”. How does that affect my plan?
The words I may hear
- IGHV mutational status: Whether the leukaemia's antibody gene has been 'edited' by the immune system.
- del(17p) / TP53 aberration in CLL: A del(17p) deletion or TP53 mutation means loss or damage of the p53 safety gene in CLL.
- Undetectable MRD (uMRD / MRD-negative): The test for leftover cancer cells found none, down to the sensitivity of the assay (often one cell in 100,000 or a million).
- Flow cytometry (immunophenotyping): A machine that streams cells one by one past lasers and reads the surface proteins (CD markers) each carries, identifying what kind of cell it is.
- Tumour lysis syndrome (TLS): When a treatment kills cancer cells faster than the body can clear their contents, flooding the blood with potassium, phosphate and uric acid and injuring the kidneys and heart.
- TP53-mutated (p53-abnormal): Loss of the p53 'guardian of the genome', the most commonly mutated gene in cancer.
Tests and results to bring
Biomarker results to ask for: del(17p) by FISH and TP53 mutation, IGHV mutational status, CLL-IPI score, Beta-2 microglobulin, Complex karyotype, Undetectable MRD at end of fixed-duration therapy, Cardiac risk factors before BTK inhibitors.
Scans and tests linked to this cancer: Cytogenetics and FISH, Multiparameter flow cytometry MRD.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Asymptomatic early-stage disease: Watch and wait with counts every three to twelve months; treat only on iwCLL indications. (Flow cytometry (immunophenotyping), IGHV mutational status, del(17p) / TP53 aberration in CLL, Cytogenetics and FISH)
- First treatment, fixed duration: Venetoclax plus obinutuzumab for 12 months (CLL14, CLL13); ibrutinib-venetoclax (GLOW, CAPTIVATE) or acalabrutinib-venetoclax with or without obinutuzumab (AMPLIFY) for fit patients. (Venetoclax, Obinutuzumab, CLL14, CLL13 / GAIA, Ibrutinib, Acalabrutinib, GLOW, CAPTIVATE, AMPLIFY, Venetoclax + obinutuzumab (12 months), BTK inhibitor + venetoclax, fixed duration)
- First treatment, continuous: Acalabrutinib (ELEVATE-TN) or zanubrutinib (SEQUOIA) until progression, preferred for del(17p) or TP53-mutated disease; ibrutinib where the newer agents are unavailable. (Acalabrutinib, Zanubrutinib, Ibrutinib, ELEVATE-TN, SEQUOIA, Caution: ibrutinib in patients with cardiac risk)
- Chemoimmunotherapy: Fludarabine-cyclophosphamide-rituximab or bendamustine-rituximab only for IGHV-mutated disease without TP53 aberration where targeted drugs are unavailable; never for del(17p). (Fludarabine, Cyclophosphamide, Rituximab, Bendamustine, Chlorambucil, Caution: chemoimmunotherapy in del(17p)/TP53 CLL)
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