ABSTRACT
Chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) are essentially different manifestations of the same disease that are similarly managed. A number of molecular and cytogenetic variables with prognostic implications have been identified. Undetectable minimal residual disease at the end of treatment with chemoimmunotherapy or venetoclax-based combination regimens is an independent predictor of improved survival among patients with previously untreated or relapsed/refractory CLL/SLL. The selection of treatment is based on the disease stage, presence or absence of del(17p) or TP53 mutation, immunoglobulin heavy chain variable region mutation status, patient age, performance status, comorbid conditions, and the agent's toxicity profile. This manuscript discusses the recommendations outlined in the NCCN Guidelines for the diagnosis and management of patients with CLL/SLL.
Subject(s)
Leukemia, Lymphocytic, Chronic, B-Cell , Humans , Leukemia, Lymphocytic, Chronic, B-Cell/diagnosis , Leukemia, Lymphocytic, Chronic, B-Cell/drug therapy , Leukemia, Lymphocytic, Chronic, B-Cell/genetics , Prognosis , ImmunotherapyABSTRACT
There is growing Internet and social media use among patients with rare blood cancers, notably myeloproliferative neoplasms (MPNs). A 38-item online questionnaire was developed to assess patients' (n = 983) disease understanding and use of online resources regarding MPN. Many responders (74%) reported unawareness of additional mutations beyond their primary molecular marker(s); 32% were unsure of their prognostic risk stratification. Additionally, 89% reported using online resources (Facebook (61%); Google/Google+ (42%); YouTube (34%); blogs (26%); Twitter (5%)) to seek information about MPN. Despite this, results showed many gaps in patients' basic disease knowledge. Our findings suggest an important difference in social media habits between physicians and patients: physicians are rapidly adopting Twitter as their preferred medium for sharing medical knowledge; however, patients often prefer other social mediums. Educational campaigns should be designed in more personalized ways, aiming to fit a variety of online platforms to maximize reach and impact for patients with MPN.
Subject(s)
Hematologic Neoplasms , Myeloproliferative Disorders , Neoplasms , Social Media , Hematologic Neoplasms/diagnosis , Hematologic Neoplasms/therapy , Humans , Myeloproliferative Disorders/diagnosis , Myeloproliferative Disorders/genetics , Surveys and QuestionnairesABSTRACT
Being a patient with chronic lymphocytic leukemia and now in the midst of infusion treatment after a 17-year remission, I cannot praise oncology nurses enough. I am overwhelmed by their professionalism and warmth and I am delighted to share my perspective as a patient.
Subject(s)
Antineoplastic Agents/therapeutic use , Continuity of Patient Care/organization & administration , Leukemia, Lymphocytic, Chronic, B-Cell/drug therapy , Leukemia, Lymphocytic, Chronic, B-Cell/psychology , Oncology Nursing/organization & administration , Patient Satisfaction , Remission Induction/methods , Adult , California , Chronic Disease/drug therapy , Humans , Longitudinal Studies , MaleABSTRACT
Social media utilizes specific media platforms to allow increased interactivity between participants. These platforms serve diverse groups and purposes including participation from patients, family caregivers, research scientists, physicians, and pharmaceutical companies. Utilization of these information outlets has increased with integration at conferences and between conferences with the use of hashtags and "chats". In the realm of the "e-Patient" it is key to not underestimate your audience. Highly technical information is just as useful as a basic post. With growing use, social media analytics help track the volume and impact of content. Additionally, platforms are leveraging each other for uses, including Twitter, blogs, web radio, and recorded video and images. We explore information on social media resources and applications from varying perspectives. While these platforms will evolve over time, or disappear with new platforms taking their place, it is apparent they are now a part of the everyday experience of oncology communication.
Subject(s)
Oncologists/education , Social Media/statistics & numerical data , HumansABSTRACT
The 21st century has seen rapid, positive changes in the management of chronic lymphocytic leukaemia from the patient's perspective. New prognostic and predictive markers have ushered in the start of more precise and individualized therapy. For the first time, combined therapy [fludarabine, cyclophosphamide and rituximab] has been shown to prolong life significantly. Clinical trials have become more adaptive, faster and more patient friendly. Perhaps the greatest change of all is the development of novel oral agents (ibrutinib and idelalisib) and powerful monoclonal antibodies that offer robust and durable disease control. Finally, access to and understanding of these changes through an empowered and educated patient population has grown through live education forums and the Internet.
