Life with Leukemia: Highlights from our 2018 Blood Cancer In America Survey

Our 2018 Blood Cancer In America survey received over 2,500 responses from nearly 2,000 individuals who have received a blood cancer diagnosis or who are in the process of being diagnosed, as well as over 600 caregivers to these individuals. The survey contained over 100 questions related to quality of life, ongoing symptoms, additional health conditions, treatment usage, and more, leading to results that provided an interesting and in-depth picture of what life with blood cancer is like. Of the respondents, 29% reported either having a form of leukemia or being a caregiver of an individual with leukemia. There are many different types of leukemia, however, nearly all cases include dysfunction with the body’s white blood cells. White blood cells play a large role in the body’s ability to fight off infections and attack other foreign invaders or abnormal processes in the body.1,2

Leukemia can be fast or slow growing, and can have varying responses to treatment. Several of the most common types of leukemia include acute myeloid leukemia (AML), chronic lymphocytic leukemia (CLL), and chronic myeloid leukemia (CML).1,2 Of survey respondents, 32% were either diagnosed with CLL or cared for someone with CLL, 30% were diagnosed with AML or cared for someone with AML, and 16% were diagnosed or cared for someone with CML. The remaining 22% of respondents were diagnosed or cared for someone with another form of leukemia besides AML, CML, or CLL.

Diagnosing leukemia

Leukemia can be found and diagnosed before or after symptoms begin to develop. In some cases, early signs of leukemia are similar to common symptoms of an infection or the flu, such as fever, chills, persistent fatigue, swollen lymph nodes, and weakness.1 For this reason, symptoms may not initially indicate the presence of leukemia, and it may take some time to receive a diagnosis. Despite this potential delay in diagnosis, according to the Blood Cancer In America survey, individuals with leukemia were, on average, diagnosed at a younger age than their counterparts with other types of blood cancers.

Across all types of leukemia, 55% of individuals were diagnosed between ages 20-59 years old, while 41% were diagnosed at age 60 or older. Less than 5% of individuals with leukemia were diagnosed before 20 years old. Respondents with AML and CML were more likely to seek a diagnosis after experiencing related symptoms, while those with CLL often received a diagnosis during a routine exam without before any symptoms started. The most common modes of diagnosis of leukemia included:

The majority of respondents were diagnosed by a hematologist oncologist, and roughly a third of respondents with leukemia sought a second opinion on their diagnosis.

Daily management

Respondents across all types of leukemia had a similar level of fear of the future, however, individuals with CML reported a significantly lower quality of life when compared to individuals with other types of leukemia. The most common resource utilized for information about leukemia across all types of the condition was the individual’s healthcare provider. In regard to regular, recurring symptoms experienced, the following results were found amongst the leukemia population:

  • Fatigue (67% of respondents)
  • Aches in arms, legs, or hips (48% of respondents)
  • Shortness of breath (33% of respondents)

Treatment plans

In regard to treatment, the most common options utilized by individuals with leukemia were chemotherapy (61%), transfusion therapy (42%), and steroid therapy (27%), and over 65% of individuals with leukemia reported regularly visiting their hematologist oncologist. Positively, roughly 60% of respondents felt as though their cancer and their symptoms were under control and manageable with their current treatment plan.

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