Life with Myeloma: 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, 33% reported either having multiple myeloma or being a caregiver of an individual with multiple myeloma.

Multiple myeloma is a cancer that impacts plasma cells. Plasma cells are a type of white blood cell that creates antibodies. Plasma cells and their antibodies help the body fight off infections and other foreign invaders. When an individual has multiple myeloma, their abnormal or cancerous plasma cells will keep multiplying and can crowd out healthy blood cells in the bone marrow. This can cause complications and impact the way the body functions and fights off potential threats. The abnormal properties of the cells in multiple myeloma can also cause damage to the kidneys and bones.1,2

Diagnosing multiple myeloma

Multiple myeloma can be found and diagnosed before or after symptoms begin to develop. In many cases, multiple myeloma is found during routine exams or during investigation of a different health issue, before symptoms even begin to develop. When early signs do begin to appear, they are often similar to common symptoms of many other non-cancerous conditions, including as nausea, constipation, changes in appetite, brain fog, an increased rate of infection, changes in weight, and fatigue.1 For this reason, symptoms may not initially indicate the presence of multiple myeloma, and it may take some time to receive a diagnosis. Of survey respondents with multiple myeloma, 16% were diagnosed before age 50, 34% were diagnosed between ages 50-59, and 50% were diagnosed at age 60 or older.

Detection of multiple myeloma occurred after symptoms began to develop for roughly 35% of respondents, while detection occurred during an emergency room visit or hospital stay for 25% of respondents. Additionally, detection occurred during a routine exam with a blood test for 22% of respondents. The most common tests and exams used to diagnose multiple myeloma included:

  • Bone marrow biopsy (82% of respondents)
  • Blood tests (75% of respondents)
  • Imaging tests, specifically X-ray (37% of respondents)

The majority of respondents were diagnosed by a hematologist oncologist, and nearly 40% sought a second opinion on their diagnosis. Recurrence of multiple myeloma was experienced in 30% of individuals with the condition.

Daily management

The most common resource utilized for information about multiple myeloma was the individual’s healthcare provider. Across all types of blood cancer, individuals with multiple myeloma reported being the most satisfied with the care they received (or currently receive) from their healthcare provider, even though individuals with multiple myeloma typically need to undergo frequent testing and scanning. In regard to regular, recurring symptoms experienced, the following results were found amongst the multiple myeloma population:

  • Fatigue (73% of respondents)
  • Aches in arms, legs, or hips (51% of respondents)
  • Bone pain or fractures (39% of respondents)

Treatment plans

In regard to treatment, the most common options utilized by individuals with multiple myeloma were chemotherapy (78%), steroid therapy (59%), and stem cell transplant (56%), and nearly 70% of individuals with multiple myeloma reported regularly visiting their hematologist oncologist. Approximately 56% of respondents felt as though their cancer and their symptoms were under control and manageable with their current treatment plan, however, out of all types of blood cancers investigated in the survey, individuals with multiple myeloma were most likely to stop using medications due to side effects. Multiple myeloma treatment can be expensive and lead to higher out of pocket treatment costs. Not surprisingly, individuals with the condition are the leading users of financial support programs when compared to individuals with other types of blood cancer at this time.

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