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
- CLL-IPI (chronic lymphocytic leukaemia prognostic index): CLL-IPI scores five things at diagnosis (TP53 loss or mutation, unmutated IGHV, raised beta-2 microglobulin, advanced stage and age over 65) to predict time to first treatment and survival; TP53 and IGHV are the two that still change which drug is chosen, because they decide whether chemo-immunotherapy is ever an option.
- 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.
- TP53-mutated (p53-abnormal): Loss of the p53 'guardian of the genome', the most commonly mutated gene in cancer.
- 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.
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