THE CLL PATIENT JOURNEY

CLL is a chronic and heterogeneous disease. It is characterised by contradictions and alternates between periods with and periods without treatment. In this section, you can follow patients through their journey. You will learn more about the CLL diagnosis, the prognosis of the disease, the “Watch & Wait” stage, the initiation of treatment, the unfortunate stage of relapsing, and the clinical trials conducted.

Following the “Patient Journey” will help you gain a better appreciation of the various roads that a patient might walk through and the possible challenges that arise in the different stages of the disease course.

EXPLORE THEIR JOURNEYS

Diagnosis
DiagnosisWatch & Wait
DiagnosisWatch & WaitPrognosis
DiagnosisWatch & WaitPrognosisTreatmentRemission
DiagnosisPrognosisTreatmentRemission
DiagnosisPrognosisTreatmentClinical Trial
DiagnosisWatch & WaitPrognosisTreatmentRemissionRelapse
DiagnosisPrognosisTreatmentRemissionRelapsePrognosisTreatmentRemission
DiagnosisWatch & WaitPrognosisTreatmentRemissionRelapsePrognosisTreatmentRemission

Michael is 43 years old and, recently, he got diagnosed with Chronic Lymphocytic Leukemia (CLL). A couple of months ago, he had his annual check-up. When his doctor saw the results, he suggested a few extra examinations and referred him to a hematologist. Based on the results of his tests, his hematologist confirmed he has CLL and announced it to him. He gave him details about this diagnosis, and explained to him that CLL has many differences compared to other forms of cancer. Even though this was reassuring, Michael is still feeling overwhelmed. Currently, he is waiting for his doctor’s instructions on what to do next.

Anna is 50 years old. She got a Chronic Lymphocytic Leukemia (CLL) diagnosis when she was 44 years old. After some regular blood tests, her physician found some unusual indicators and referred her to a hematologist. After giving her the diagnosis, her hematologist explained that no treatment is recommended for the time being. Instead, he suggested regular appointments for medical check-ups and lab tests, which is called active monitoring or Watch and Wait. Anna sometimes worries because she is not taking any treatment despite having a chronic disease. She also worries about the course of CLL and how things will be in the future. However, she feels that CLL has not changed her everyday life in any way and this helps soften her feelings of anxiety.

Mary is 55 years old and her physician announced to her that she has Chronic Lymphocytic Leukemia (CLL) 6 years ago. In the beginning, Mary was in the “Watch and Wait” phase, rather than on treatment. In one of the regular monitoring tests, more lymphocytes were detected in her blood. Her physician gave her a clinical examination and explained to her that CLL had become active. In order to choose which treatment would be best for her, he suggested a few extra examinations, that are called “prognostic tests”. Mary is anxious about what the experience of treatment will be like, but she trusts her doctor and she is trying to remain optimistic.

Penelope is 59 years old and she has been living with Chronic Lymphocytic Leukemia (CLL) since she was 50 years old. In the beginning, Penelope was in the “Watch and Wait” phase for 5 years. However, at some point, Penelope had constant bouts of fever and night sweats. The examinations revealed that CLL got worse. After this, she did a few extra examinations in order to find out which treatment is best for her. Penelope and her physician chose among the available treatments and she began targeted therapy. The treatment helped her and the symptoms gradually disappeared. Even though she still undertakes regular medical checkups, she is not taking any treatment. She continues her usual activities and feels quite happy.

Mark is 60 years old. He got diagnosed with CLL 4 years ago. Based on the results of his blood tests and findings from his physical examinations, his hematologist suggested that he should start therapy to control his CLL. After a few examinations which were targeted to determine the most suitable treatment, Mark began therapy which was successful, and CLL became inactive after some time. Now, Mark is in remission and does not take any treatment. The previous period was quite challenging for him, but now he feels calm and happy.

Nick is 62 years old and he received a Chronic Lymphocytic Leukemia (CLL) diagnosis at the age of 57. After the diagnosis, and before starting treatment, his hematologist asked him to undertake prognostic tests. Their results helped his doctor to identify the most suitable treatment. Nick and his hematologist chose one of the recommended treatments, but after some months the healthcare team realized that this treatment was ineffective in his case. His physician suggested that Nick takes part in a Clinical Trial. Clinical trials usually evaluate new drugs, different combinations of existing ones, or new ways of administering standard treatments. Nick has dealt with intense anxiety lately, so he asked for psychological support from experts. Now, he feels better and he is optimistic about the course of CLL.

Zehra is 69 years old and she found out she has Chronic Lymphocytic Leukemia (CLL) at the age of 60. In the beginning, she was in “Watch and Wait” and did not receive any treatment. At some point, physicians detected in her lab tests that CLL was active, so they asked Zehra to undertake prognostic tests to determine which treatment is most suitable for her. Zehra and her hematologist decided to start a targeted therapy. The treatment was effective and a remission was achieved. However, signs of CLL progression reappeared and Zehra lost weight and started to feel weak. She visited her physician and after the required examinations, she announced to her that CLL was active again. Zehra felt quite frustrated and overwhelmed. Nevertheless, her hematologist explained to her that a new line of treatment might be what is needed to get on top of CLL once again. Now, Zehra feels less stressed and she is waiting for her doctor’s recommendations on what to do next.

Lucas is 75 years old. He has been living with Chronic Lymphocytic Leukemia (CLL) for five years now. After the diagnosis, the physician recommended to him to undertake prognostic tests, to decide which treatment is the best for him. They chose a treatment for a period of one year, and Lucas achieved remission with CLL being inactive. However, after 3 years, Lucas observed swollen lymph nodes in his neck area. His hematologist detected that CLL got worse and explained to Lucas that they had to repeat the prognostic tests. After the results, they agreed regarding the treatment. Lucas started a novel treatment scheme. Thanks to this treatment, Lucas’s symptoms subsided. Nevertheless, Lucas continues with regular appointments and medical exams to ensure that remission continues. He has learned to live with CLL and he does not feel so threatened by it.

Theodor is 77 years old. When he was 63, his hematologist announced to him that he has Chronic Lymphocytic Leukemia (CLL). In the beginning, Theodor was in the “Watch and Wait” phase. At some point, the symptoms of CLL started to appear: he started getting very tired when going about his usual activities and also experienced drenching night sweats. After undertaking certain prognostic tests, his hematologist suggested starting a targeted therapy. Treatment helped Theodor feel better. Theodor continued taking his treatment without having symptoms anymore, while he had regular check-ups. Gradually, his hematologist observed signs that CLL was actively back. He repeated the process: he had prognostic tests, and his hematologist suggested a different type of treatment which was effective. Theodor’s symptoms have subsided and he can continue enjoying caring for his grandchildren.

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