By Lorna Warwick, CEO Lymphoma Coalition
Have you ever been so tired you could barely keep your head up in a meeting? Ever had to stop for yet another cup of gas station coffee because you are afraid of falling asleep at the wheel? Being tired is something everyone deals with from time to time, but the fatigue that comes with a common type of adult blood cancer called chronic lymphocytic leukemia (CLL) is like being at your peak exhaustion, every day. It’s the most frequently patient-reported symptom of CLL affecting quality of life, a result of both the disease itself and a treatment side effect.1 Unfortunately, it’s difficult for most people to appreciate what such extreme exhaustion feels like on a daily basis or how it can impact your life. How does it feel to be so tired that you have no energy to do many of the things you used to do in your life, even the things you love the most?
CLL patients are typically over 70 years old and suffer from many other health complications so the side effects of their CLL treatment and how it affects their quality of life is a critical consideration.2,3 Extreme fatigue is just one of the examples of the symptoms that patients with CLL face. Others include a compromised immune system, weakness, chills, night sweats and swollen lymph nodes.4 In addition, side effects of CLL treatments can cause complications for this typically older patient population. Depending on the treatment, which is sometimes chemotherapy, these can include increased risk of infection, nausea and vomiting, alterations in taste, dizziness, hair loss, skin changes, bleeding, bruising, diarrhea and muscle and joint pain.5-7
CLL is an area that has seen a remarkable increase in the number of innovative treatment options available to patients in recent years, and patients are living longer, better lives because of it.8 But the influx of treatments means healthcare communities and treating physicians have a hard time staying on top of the latest news and information about new treatments available, how and when they should be administered and to which patient groups under what conditions. And even though there are new therapy options, fatigue remains an issue.
I have always been described as a “high energy” person, and one of the things that drew me to a career that focuses on helping patients with CLL and other blood cancers was an appreciation for how terrible it would be to experience the levels of exhaustion these diseases cause. I’m so grateful that when I wake up in the morning I have the energy to work at a job that I love, helping to affect change through a global network of advocacy organizations working to ensure the voices of patients with CLL and other blood cancers are heard. As CEO of the Lymphoma Coalition, it’s my honor to work alongside our 83 member organizations spanning 52 countries serving patients and families with CLL and other lymphomas. We provide current, evidence-based guidance and information to help member organizations stay on top of the most pressing issues and latest treatment research so that patients in their network are informed and can benefit from the latest advances in treatment and disease management practices.
To keep a pulse on the most current and pressing issues facing patients globally, the Lymphoma Coalition surveys patients and caregivers every two years to understand their top challenges. Our latest survey revealed fatigue was the top-reported symptom affecting their quality of life among lymphoma patients across all stages of the disease and can be a lasting issue, including eight or more years after stopping treatment. Despite the massive impairment fatigue can have on a patient’s daily life, the survey also found a large number of patients were not referred on to further information or support by their doctor and/or nurse even though certain behavior changes are known to help them cope. In short, patients are surviving, but need to be surviving well.1
In response to these findings, our organization is working with leading physicians and industry to include fatigue and other key elements of patient well-being as part of clinical trial designs to ensure the medicines of the future are being measured against not only treating the disease itself but also improving the patient’s ability to live his or her best life. To ensure these insights are activated on a grass roots level, we empower our members with survey details as well as white papers and fact sheets for managing fatigue, and guide our partner organizations to encourage more discussion on its role in treatment as part of the conversations that happen between the doctors and their patients. We are also working with leading physicians to define better fatigue measurement scales and encouraging healthcare professionals to address fatigue routinely when meeting with patients.
It’s through activities like the survey and patient/caregiver support programs that we are living our mission at Lymphoma Coalition — enabling global impact by fostering a lymphoma ecosystem that ensures local change and evidence-based action. I’m proud of how the blood cancer community has come together to tackle the gaps in critical information that exist for these patients and look forward to continuing to make meaningful strides for all lymphoma patients. For blood cancer patients, knowledge truly is power, and we are making great progress. But there is still so much work to do.
Visit www.lymphomacoalition.org and follow along with Lymphoma Coalition at @knowyournodes to learn more.
1Lymphoma Coalition. 2018 Report Card on Lymphomas. Spotlight on the Patient Experience. Accessed March 2020.
2American Cancer Society. Key Statistics for Chronic Lymphocytic Leukemia. Accessed March 2020.
3Strati P, Parikh SA, Chaffee KG, et al. Relationship between co-morbidities at diagnosis, survival and ultimate cause of death in patients with chronic lymphocytic leukaemia (CLL): a prospective cohort study. Br J Haematol. 2017;178(3):394-402.
4American Cancer Society. Signs and Symptoms of Chronic Lymphocytic Leukemia. Accessed March 2020.
5American Cancer Society. Chemotherapy for Chronic Lymphocytic Leukemia. Accessed March 2020.
6American Cancer Society. Targeted Therapy Drugs for Chronic Lymphocytic Leukemia. Accessed March 2020.
7American Cancer Society. Monoclonal Antibodies for Chronic Lymphocytic Leukemia. Accessed March 2020.
8National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®). Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma. Version 4.2020. Accessed March 2020.
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US-38356 Last Updated 3/20