The lymphocytic leukemia chronic (LLC) It is one of the most frequent in adults and this September 1 marks its World Day. Therefore, the ALMA Association took the opportunity to disseminate the results of a survey called ‘Report on the emotional impact’, which seeks to raise awareness about the need of patients to have additional support and the importance of taking quality of life into consideration as a critical aspect when deciding on the treatment. The survey included the perspective of 313 participants from the United States, including patients (111), relatives who acted as caregivers (100) and oncohematologists (102).
Ferdinand Piotrowskipatient and Executive Director of ALMA, clarified that, despite the fact that no Argentines participated in the survey, they considered it pertinent to disseminate it “because the emotions that generate diseases like this one are universal and there are practically no differences between the sensations that a person experiences when faced with a diagnosis of 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 in a person with leukemia, but we do not discuss enough about the mental and emotional reality of the patients, that is why this survey is valuable”.
CLL is a slow-growing type of blood cancer in which the bone marrow produces a large number of lymphocytes, a type of white blood cell1. It tends to progress more slowly than other types of leukemia, and a significant proportion of patients do not develop symptoms for several years; that makes it frequent that the diagnosis is fortuitously reached in a routine check-up. This slow progress means that, in most patients who are diagnosed, they start with an approach called ‘watchful waiting’, through which the activity of the disease is frequently monitored, but no therapy is indicated at the moment.
The respondents reported experience a wide range of emotions ranging from anger and bitterness to optimism and gratitude. For those newly diagnosed CLL patients and/or whose medical professionals had indicated watchful waiting, they felt hopeful (41%) and optimistic (36%) and expressed hope for future treatment success and long-term prognosis. term. Others indicated that they felt anxious, not being able to know when they would need treatment again and not knowing what was coming next, highlighting the range and complexity of the emotions they experience. Once patients received treatment for the first time, many (42%) felt positive and reported being confident, satisfied, or reassured that the medication was working.
“These results reflect the emotional roller coaster that one experiences in the face of cancer. Many times, conflicting emotions are experienced in the same day. The important thing, as a patient, is to know yourself, to begin to identify which situations greatly alter your own state of mind in order to learning to manage our emotions”, they expressed from ALMA. “Ideally, patients should treat a disease such as CLL with emotional support. The results of this survey show the need to generate and strengthen a bond of healthy trust where dialogue between the patient and their health professional can flow. We must promote the space to talk about the stage of the disease in which the patient is, the factors that impact the prognosis of results, the therapeutic objectives that we pursue with the different treatment options available; but more importantly, we must be able to listen to how this resonates with the patient and thus be able to understand their expectations, limit anguish and uncertainty, and agree on the next steps,” explained Dr. Rosario Custidiano, hematologist at the Hematology and Hematopoietic Transplant Service of the Alexander Fleming Institute.
The importance of the patient’s emotional well-being, according to doctors
9 out of 10 treating physicians surveyed argued that the emotional well-being of the patient influences their adherence to treatment and their ability to cope with what they are going through, but also how their body responds to treatment.
Chronic lymphocytic leukemia: for 9 out of 10 specialists, the emotional well-being of the patient influences their treatment
Health professionals believe that comprehensive approach of the person with CLL is different from what is done with other types of cancer, because they practically have to consider this leukemia as a chronic disease, where therapeutic adherence and quality of life are critical aspects to determine the treatment of choice.
Dr. Custidiano explained that, in this framework, “when the disease is active requires treatment. Today we have what we call “targeted therapy” to differentiate it from traditional chemotherapy. These new medications can also be given in combination for 1 or 2 years, achieving profound responses that are maintained over time for more than 4 years. This disease-free time is also treatment-free time, where the possibility of feeling ill or experiencing treatment-related adverse events is minimized. Of course, he will have to continue with medical check-ups, but now with a completely different freedom to resume his life.”
It is very important that parallel to medical advances in terms of diagnostic methods and new treatmentsthe genuine concern that emerges for the most human aspects and the quality of life that involves not only the patient but all those involved in the management of oncological and oncohematological diseases is also considered.
“The growing role of psycho-oncology or of research like this one that was presented today help to give quality of life the place it deserves, because it doesn’t matter how you go through an oncological disease: with or without emotional support, with or without a good dialogue with your doctor, and with the need to be receiving treatment chronically or with the possibility of time-limited treatments, which favor adherence, decompress the health system, give predictability and more freedom to the patient, and really transform their quality of life”, they valued. from SOUL.
The quality of life is suffering in the face of bureaucratic obstacles
The bureaucratic obstacles for the delivery of medication or for the approval of a specific study requested by the doctor also quality of life suffers.
It is very tiring to present certain documentation over and over again so that they always give you a different excusewhile playing with the health of the person with leukemia.
The bureaucratic obstacles for the delivery of medication or for the approval of a specific study requested by the doctor also affects the quality of life
In this sense, ALMA works hard to manage the timely access of patients to what their doctors tell them, convinced that it makes no sense for science to develop better and better innovations, if later those who need them cannot access them.
Above all, they insist on this point considering that the advance is so significant for the management of some leukemias, achieving complete remissions with undetectable minimal residual disease for prolonged periods of time, even after finishing the therapeutic regimens. Such is the case of chronic lymphocytic leukemia.
Chronic lymphocytic leukemia: the role of caregivers
Another perspective also analyzed in the survey is that of the caregivers, understanding by them not the nursing or assistance staff, but the family member who is accompanying; many times it is her partner, one of her children or a father or mother, depending on their age. In the best of cases, it is a task distributed evenly among several.
Among the 100 caregivers who participated in the surveythe majority (81%) felt good when accompanying someone with LLC and felt it was their responsibility to do so, although almost three out of four said it was more difficult than expected.
Ferdinand Piotrowski recognized that “it can be an exhausting role in which, on the one hand, the love and the sense of responsibility towards that person intervene, but also the fears, the uncertainty and the pain of perhaps seeing them suffer. Then, they begin to weigh the unavoidable resignations that must be made to accompany unconditionally: reduce workload, alter routines at home (sometimes moving to the loved one’s or bringing him home), limit social life, cancel vacations, give up rest and neglect food. uncomfortable about this new reality also breeds guilt and we feel bad about it.”
“Caregivers should not minimize the impact that this whole situation is having on their own emotions and on their body, because it will inevitably lead to consequences if they fail to properly manage your energy and stresses along the way. One does not come out of this stage the same as when one started it; it can come out strengthened and full of learning, but it is a great challenge to ensure that it does not overwhelm us”, they completed from ALMA.
CLL predominantly affects adults, with an age of onset of 65 to 70 years, on average, and is more common in men than women
For more information, follow Argentine Myeloid Leukemia Association on Facebook or write to [email protected] the survey