Chronic Lymphocytic Leukeamia (CLL)

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Support and caregivers

Caring for a loved one can be rewarding but it can also bring its own set of challenges and emotions. The person that you would usually rely on for emotional support may be the person who has been diagnosed, and you feel you cannot go to them. As a carer, it is important to know that you are not alone and that the feelings you have are shared by many others in a similar situation. Finding your own support network is just as important for you as for the person you are caring for. Speak with your doctor or cancer care practitioners for advice on local support groups near you.

This website is developed exclusively by a Johnson & Johnson company. Please note that the patient advocacy groups and external sources listed below are an additional and independent source of information you might find useful. These groups and sources were not involved in the creation of this website and do not endorse its content in any way.

Patient support groups

The European LeukaemiaNet (ELN)

The European Leukaemia Network is a non-profit organisation dedicated to improving the care of people with leukaemia across Europe.

Leukaemia Care

The Leukaemia Care online forum is a place where people can ask questions anonymously or join in discussions with other people in a similar situation.

For guidance on how you can best help, and important information on how to take care of yourself, download the ‘Guidance for carers’ booklet.

References

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Global Patient and Carer Experience Survey. (2021). Available at: https://www.clladvocates.net/wp-content/uploads/2023/09/Global-Leukemia-Experience-Survey_Full-Report.pdf. Last accessed: November 2024.

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Alu, Aqu et al. BTK inhibitors in the treatment of hematological malignancies and inflammatory diseases: mechanisms and clinical studies. Journal of Hematology & Oncology. 2022 Oct;15:138.

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Tam CS, et al. Health-related quality of life outcomes associated with zanubrutinib versus ibrutinib monotherapy in patients with relapsed/refractory chronic lymphocytic leukemia and small lymphocytic lymphoma: results from the ALPINE Trial. Curr Med Res Opin. 2023 Sep:1-7.

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Eichhorst B, et al. ESMO Clinical Practice Guideline interim update on new targeted therapies in the first line and at relapse of chronic lymphocytic leukaemia. Ann Oncol. 2024;35(9):762-768.

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DrugBank Online. Warfarin. Available at: https://go.drugbank.com/drugs/DB00682. Last accessed: November 2024.

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Lipsky A, et al. Managing toxicities of Bruton tyrosine kinase inhibitors. Hematology Am Soc Hematol Educ Program. 2020 Dec;2020(1):336-345.

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Cancer Research UK. Ibrutinib (Imbruvica). Available at: https://www.cancerresearchuk.org/about-cancer/treatment/drugs/ibrutinib. Last accessed: November 2024.

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NHS Inform. Diarrhoea. Available at: https://www.nhsinform.scot/illnesses-and-conditions/stomach-liver-and-gastrointestinal-tract/diarrhoea/. Last accessed: November 2024.

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Macmillan Cancer Support. Ibrutinib (Imbruvica). Available at: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/ibrutinib. Last accessed: November 2024.

[10]

Quartermaine C, et al. (2023). Cardiovascular Toxicities of BTK Inhibitors in Chronic Lymphocytic Leukemia: JACC: CardioOncology State-of-the-Art Review. JACC: CardioOncology, 5(5), pp.570–590.

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Zeynep Tuğba Güven. CLL-256 Monocytosis Developing in the Course of Chronic Lymphocytic Leukemia: Case Report. 2024;24;Sup 1: S349-S350.

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Valla K, et al. Atrial Fibrillation: Considerations for the Use of BTK Inhibitors. Cancer Network Oncology. 2018 Nov; 32(11):574-575.

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