Look to the future with confidence, without being discouraged at the thought that a disease such as chronic lymphocytic leukemia has been your lot. Today it is possible because thanks to the progress made, the disease can become chronic and then being projected towards tomorrow becomes a question of points of view: seeing the glass half empty or half full and above all choosing to live the present well. To help patients affected by the most frequent form of leukemia to understand that chronicity represents a positive opportunity to manage the disease in the long term, the national campaign “Chronic lymphatic leukemia in my life, a future to live” starts today. the support of AstraZeneca and the patronage of Ail (Italian Association against Leukemia, lymphomas and myeloma).
A future to live
The project includes a dedicated section on the Ail website (www.ail.it/llcunfuturodavivere) with an emotional video, podcast in 3 episodes with the voices of patients and their caregivers, four video interviews with clinicians and an instant book, resources designed to support patients and their families in the correct reading of the concept of chronicity and in living with the disease. “This campaign – he explains Sergio Amadori, national president Ail – wants to favor a new narrative of this blood pathology, based on a positive re-evaluation of the concept of chronicity, which is not a condemnation but an opportunity to manage the pathology in the long term. The project is divided into a motivating and interactive path to help patients in the correct acceptance of the diagnosis and to support them in living with the disease. The information released by the experts starting from the patients’ questions will be collected in an instant book that will enhance and consolidate the results of the campaign, a travel companion to reassure patients and overcome the sense of disorientation and loneliness “. The instant book will be disseminated in digital format through the Ail website and in paper version in the local sections of the Association.
What is chronic lymphocytic leukemia
This neoplasm of the lymphatic system is characterized by an accumulation of B lymphocytes in the peripheral blood, bone marrow and lymphatic organs (lymph nodes and spleen). “It has a very heterogeneous clinical course – he explains Francesca Mauro, associate professor of the Institute of Hematology, Sapienza University of Rome. “The majority of patients have no symptoms, arrive at the diagnosis following checks carried out for other reasons and remain stable for years without the need for therapy. In these cases we adopt the ‘watch and wait’ strategy, that is ‘observe and wait’, in which the doctor monitors the progress of the disease ”. Chronic lymphatic leukemia is typical of older age: “40% of diagnoses are made over the age of 75 and only 15% by the age of 50 – underlines Sergio Amadori. “The average age at diagnosis is about 70 years. In most cases the disease progresses slowly and, in older patients, over 75, it can be difficult to find a difference in life expectancy compared to the general population ”.
Sick but not cured right away
It can be difficult for patients to accept that no treatment is followed by the diagnosis of leukemia. It can almost seem like a sentence of non-healing. “In reality – continues Mauro – some clinical studies that in the past have tried to evaluate the impact of an anticipatory therapy on overall survival have not shown an advantage in patients suffering from this form of disease. It is important to explain to the patient that therapy is often not needed from the moment of diagnosis and that it will only be inserted and if the disease becomes clinically more important over time “.
The art of patience
Therefore, the patient must understand that it is better to wait and that waiting does not represent a waste of time, but a time free from treatments in which the quality of life and relationship is better preserved. “It should also be remembered – adds Mauro – that some patients need treatment even after years and that some have a stable disease that will never require treatment. Therefore, in many cases, we can give the patient the news that he will lead a normal life, without the need for pharmacological interventions even for a long time. On the basis of the tests that are performed in specialized blood centers, some biological characteristics of the leukemic cells are evaluated which allow us to predict how the disease will behave over time and also which is the most appropriate treatment “. Precisely for this reason psychological support is essential. “In Ail we have a specific unit that periodically carries out programs with disease specialists but above all there is a phase of listening to the needs of patients and their families. The psycho-oncologist is fundamental and so is that of volunteers. for which we have started a training school for about a year and a half “, explains Amadori.
The signs of chronic lymphocytic leukemia
The person with chronic lymphocytic leukemia today can maintain their lifestyle habits, relationships with family, friends and professional career and, above all, can look to the future with planning. “There is a minority of patients – he says Antonio Cuneo, director of the Hematology Operating Unit, University Hospital of Ferrara – who develops symptoms early and has a progressive disease. The signs are usually represented by enlarged lymph nodes, anemia and thrombocytopenia with fever, feeling of fatigue and weight loss and, when they are present, they indicate the advisability of starting therapy ”.
Available therapies
How can this pathology be treated today? Given the complexity of the disease, the therapeutic strategy is evaluated in relation to factors such as: age and condition of the patient, assessment of the risk of the disease and its biological characteristics. In general, current reference therapies use a combination of drugs and monoclonal antibodies. “Traditional immuno-chemotherapy is still effective but only in some cases”, Cuneo replies. “The revision of the European guidelines, however, has reduced the number of patients eligible for this approach, so targeted therapies are destined to increasingly become the standard of care, guaranteeing very high efficacy and tolerability, essential for these ‘chronic’ patients. . Therefore, even people who have symptoms and therefore require treatment can now lead a normal life thanks to innovative therapies, which must be carried out in specialized hematology centers ”.
The scenario of the next therapies
In recent years, the scenario of therapies has changed with the advent of biological drugs. Some of these act on the signal transfer chain within the cell. Others act by inducing the diseased cell to undergo a sort of planned suicide. Clinical trials on these molecules are still ongoing and at a more or less advanced stage of development.
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