Sunday, September 25, 2022

Chronic lymphocytic leukemia: emotional well-being affects treatment

Chronic lymphocytic leukemia occurs most often in adults and this World Day is observed on 1 September. For this reason, the ALMA Association took the opportunity to spread The results of a survey called the ‘Emotional Affect Report’, which seeks to raise patients’ awareness of the need for additional support and the importance of considering quality of life as an important aspect when making decisions about treatment .

The survey included the perspective of 313 participants from across the United States, including patients (111), relatives who worked as caregivers (100) and oncomatologists (102).

Fernando Piotrowski, ALMA . Patient and Executive Director ofclarified that, despite the fact that none of the Argentines took part in the survey, they deemed it appropriate to spread “since the emotions that generate such diseases are universal and the sensations experienced by a person upon being diagnosed.” There is practically no difference between. Leukemia in Argentina, in the United States, in Europe or anywhere in the world. We know a lot about what happens to the body and bone marrow of a person with leukemia, But we don’t discuss enough about the mental and emotional reality of patients, so this survey is valuable.

CLL is a slow-growing blood cancer in which the bone marrow produces large numbers of lymphocytes, a type of white blood cell. It progresses more slowly than other types of leukemia, and a significant proportion of patients do not develop symptoms for many years; This makes it frequent that the diagnosis is reached accidentally in routine screening. This slow progression means that, in most patients diagnosed, they begin with an approach called ‘watchful waiting’, through which disease activity is often monitored, but no medical indication is given at this time. Is.

Respondents reported experiencing a wide range of emotions, from anger and bitterness to optimism and gratitude. Those newly diagnosed CLL patients and/or those whose medical professionals indicated watchful waiting felt hopeful (41%) and optimistic (36%) and expressed hope for future treatment success and long-term prognosis.

Others indicated that they were feeling anxious, not being able to know when they would need treatment again and not knowing what was going on next, which could affect the extent and complexity of the feelings they experienced. exposes. Once patients received treatment for the first time, many (42%) reported feeling positive and reassured, satisfied, or reassured that the drug was working.

“These results reflect the emotional roller coaster experienced by cancer. Many times conflicting emotions are experienced in the same day. The important thing as a patient is to know yourself, begin to recognize that your What situations change your state of mind greatly to learn to manage emotions?Expressed from ALMA.

“Ideally, patients should go through an illness such as CLL with emotional support. The results of this survey reflect the need to generate and strengthen the bonds of healthy trust where communication between the patient and their health professional can take place. We should promote space to talk about the stage of the disease the patient is in, the factors that affect the prognosis of outcomes, the therapeutic objectives that we pursue with the various treatment options available; but more importantly, that we should be able to hear how this resonates with the patient and thus be able to understand their expectations, limit pain and uncertainty, and agree on next steps”, explained Dr. Rosario Custidiano, a hematologist at the Alexander Fleming Institute’s Hematology and Hematopoietic Transplant Service.

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Nine out of 10 physicians surveyed said a patient’s emotional well-being affects their adherence to treatment and their ability to cope, but also how their body responds to treatment.

Health professionals agree that the comprehensive approach for a person with CLL is different from that of other types of cancer, as they practically have to treat this leukemia as a chronic disease, where therapeutic adherence and Quality of life is an important aspect. treatment of choice.

Dr. Custidiano explained that, in this context, “when the disease is active, it requires treatment. Today we have what we call “targeted therapy” to differentiate it from conventional chemotherapy. These new drugs can also be given in combination for 1 or 2 years, to achieve intense reactions that last for more than 4 years. This disease-free time is also treatment-free time, where there is no feeling of illness or no treatment. are least likely to experience adverse events.

It is of great importance that in parallel with medical advances in terms of diagnostic methods and new treatments, the genuine concern that emerges for the most human aspects and quality of life involving not only the patient but all who intervene. Management of oncological and oncohematological diseases.

“The growing role of psycho-oncology, or the research as presented today, is helping to give quality of life the place it should be, because it does not matter how an oncological illness is experienced: emotional accompaniment. With or without, with or without a good communication with our doctor, and with the need to receive chronic treatments or with the possibility of time-limited treatments that favor adherence, disrupt the health system, patients more freedom to forecast and in fact they change their quality of life”, valued from ALMA.

Bureaucratic barriers to drug delivery or approval of a specific study requested by a doctor also affect quality of life. It is too tiring to submit some documents over and over again so that they always give you a different excuse while playing with the health of a person with leukemia.

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In this sense, ALMA works hard to manage timely access for patients to what their doctors tell them, convinced that it makes no sense for science to develop ever-improving innovations, if They can’t reach them when they need them later.

Above all, they emphasize that advances are so important to the management of some leukemias, achieving complete remission with undetectable minimal residual disease long after therapeutic plans have been completed. This is the case of chronic lymphocytic leukemia.

role of caregivers

Another perspective analyzed in the survey is that of caregivers, understanding not nursing or support staff, but family members who are with them; Sometimes it is their partner, one of their children or the father or mother, depending on their age. In the best cases, it’s work evenly distributed among many.

Of the 100 caregivers who participated in the survey, the majority (81%) felt good about visiting someone with CLL and considered it their responsibility to do so, although nearly three in four said it was more than expected. was more difficult.

Fernando Piotrowski recognized that “it can be an exhausting role, in which, on the one hand, a sense of love and responsibility towards that person interferes, but also fear, uncertainty, and perhaps the pain of seeing them. Then, they begin to weigh the inevitable resignations that must be made to accompany them unconditionally: reduce workload, change routines at home (sometimes visiting a loved one or bringing them home), social life Limiting, canceling vacations, neglecting rest and food. Feeling uncomfortable about this new reality also breeds guilt and makes us feel bad about it.”

“Carers should not underestimate the effect this whole situation is having on their emotions and their bodies, as it will inevitably result, if they manage to properly manage their energy and stress along the way. don’t. No one comes out of this stage the same way they started; it can be strong and full of learning, but it’s a big challenge to make sure it doesn’t overwhelm us”, he told ALMA completed.

For more information, follow the Argentine Myeloid Leukemia Association on Facebook or write to

about the survey

The 31-35 question self-administered online survey involved three groups of participants, each with its own questions: the patient group (111) and the caregiver group (100) consisting of adults 18 years of age and older from the United States Were. The physician group (102) consisted of board-certified hematologists and oncologists who had treated at least five patients with CLL during the previous 12 months. All surveys were completed between March 11 and April 7, 2022. C space services were used and the survey included both qualitative and quantitative questions.

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