Blood Cancer In America: Community Findings Over The Years

A blood cancer diagnosis is a shock, but what can make it more difficult is navigating the information and research available for patients and their loved ones. To learn more about the challenges of living with blood cancer, we are conducting our In America survey. By taking our survey, you can bring awareness to the realities of life with blood cancer and help others feel less alone. Share your experiences: Take our Blood Cancer In America Survey! What is the survey about? The survey covers “basics” like your diagnosis and treatment experiences, but also dives into the nuances of blood cancer, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about blood cancer but also any other conditions you are living with and how each impacts your life. Why should you take the survey? Each person who takes the In America survey contributes to a better understanding of blood cancer as well as other health conditions. With better knowledge, we can help others who are navigating health challenges feel less alone. We hope to capture a full picture of all aspects of your health experiences and bring greater awareness to conditions that may be misunderstood. Sharing your experiences through the survey can reveal how similar each person’s journey is, as well as the differences that make each journey unique. What will the survey ask me? The survey will ask about different moments of your journey with blood cancer, including: Diagnosis Symptoms and symptom management Quality of life Treatment awareness and experience Other diagnosed conditions We do not require your name, address, or other personal information for you to participate. You also do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return to it when you are able. You may continue where you left off. How do we use the In America survey data? Survey responses help us and our partners better understand the blood cancer community. All survey responses remain confidential, reported only in total. This means your specific responses will not be reported individually. All information will become property of Health Union, LLC. Throughout the year, we may highlight important findings and develop new content based on what we learned from the survey. We hope this contributes to the information available to those in our community and helps you connect with others who walk the same path. Share your experiences: Take our Blood Cancer In America Survey! Sharing your story can make a difference, and we believe each story can change how others understand life with blood cancer. Still have questions? Comment below, or email us at contact@blood-cancer.com for more information. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] ,In our 2018 Blood Cancer In America survey, over 2,500 people impacted by blood cancer shared their experiences about diagnosis, treatment, and living with blood cancer. Blood cancer is an umbrella term that encompasses several different types of cancer, and our survey results indicated several differences, as well as many similarities, between the different blood cancer types. Types of blood cancer among survey respondents 33% Multiple myeloma 32% Lymphoma 29% Leukemia 6% Other (including MDS and MPN) 1% were in the process of being diagnosed Differences in quality of life Dealing with blood cancer, its treatment (which can be grueling), and the emotional impact greatly impacts an individual’s quality of life. However, there were differences in this impact among the different types of blood cancer. People with lymphoma have the highest quality of life among the different groups, and they were most likely to be working and enjoying life. Survey respondents with lymphoma were also most likely to be NED (no evidence of disease), which may influence their higher quality of life rating. Among those with lymphoma, those with Hodgkin lymphoma had a lower quality of life than those with non-Hodgkin lymphoma, and they were more likely to have difficulties with work or school. Differences in time to diagnosis There are several tests used to diagnose blood cancer, and while the different types have some variation, many of the tests are used for all types of blood cancer. As for the time it takes to get that diagnosis, those with leukemia have the fastest time from detection to diagnosis, with the majority being diagnosed within two weeks: 86% of those with acute myeloid leukemia (AML), 72% of those with chronic myeloid leukemia (CML), and 59% of those with chronic lymphocytic leukemia (CLL) were diagnosed within two weeks. Differences in approach to treatment Each type of blood cancer has its own recommended treatment, although across all the types, most (69% of all survey respondents) are treated with some form of chemotherapy. The way people approach their treatment is different, however. Survey results showed that those with multiple myeloma more commonly seek a second opinion and are most likely to be satisfied with their healthcare professional. Those with multiple myeloma were also most likely to have stopped treatment due to side effects. Differences in managing side effects Treatment for blood cancer comes with a range of side effects that are taxing on the body and a person’s outlook. Among survey respondents, those with lymphoma are most likely to use medications to help manage nausea and vomiting, and these individuals were also more likely to say their symptoms were under control with their current treatment plan. Similarities between types Despite these differences, those impacted by blood cancer are united in the many similarities of their journeys. From the anxiety while waiting for a diagnosis to the trials and challenges of treatment, members of our blood cancer community can relate to each other through many shared experiences. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Life with blood cancer can vary from person to person. Symptoms, treatment, side effects, progression, remission, and more are unique to each situation. For some, symptoms may be disabling and life altering, while for others, symptoms may be more manageable. We conducted our 3rd Blood Cancer In America survey to learn more about blood cancer and the way symptoms and side effects impact those living with it. More than 1,900 men and women with blood cancer completed the survey, providing a unique look at the condition. Most people suffer from fatigue Fatigue is by far the most common symptom experienced by people with blood cancer. More than 80 percent of survey respondents shared that have felt fatigued as a result of their diagnosis. Nearly 70 percent of respondents also said they experienced fatigue as recently as the past month. Bowel issues, pain, and neuropathy are other common symptoms More than half of all survey respondents said they have experienced bowel issues, pain, and neuropathy (tingling in hands and/or feet) because of their blood cancer. 54 percent experienced bowel problems such as constipation or diarrhea 52 percent experienced aches, pain, or fractures in joints or bones 51 percent experienced neuropathy A variety of other physical, mental, and emotional symptoms Survey respondents also shared that they have dealt with a wide range of symptoms and treatment side effects impacting their physical, mental, and emotional well-being. These responses show that blood cancer has a far-reaching effect on the people living with it. Symptoms shared include: Night sweats (48 percent) Hair loss (47 percent) Trouble thinking or brain fog (47 percent) Skin irritation or changes (44 percent) Leg cramps (44 percent) Depression or other mood changes (42 percent) Nausea or vomiting (40 percent) Anemia (low red blood cell count) (40 percent) Breathing problems, including shortness of breath (39 percent) Excessive bruising (36 percent) Low white blood cell count, including neutropenia (36 percent) Loss of appetite (36 percent) Unexpected weight changes (34 percent) Loss of sex drive (32 percent) Tiny red spots on the skin (petechiae) (31 percent) Chills (30 percent) Less common symptoms Beyond the long list of more regularly reported symptoms, some survey respondents noted less common symptoms of their blood cancer. These include: Mouth and/or throat sores (29 percent) Infections (26 percent) High blood pressure (24 percent) Increased thirst (24 percent) Swelling or fluid retention (22 percent) Enlarged lymph nodes (21 percent) Fever (20 percent) Osteoporosis (weakened bones) (20 percent) Blood cancer symptoms are persistent More than 90 percent of all survey respondents shared that they had experienced symptoms or side effects of their blood cancer within the past month. This includes the 70 percent who reported fatigue, but also takes into account other symptoms. Different physical, mental, and emotional symptoms that affected survey respondents within the past month include: Aches, pain, or fractures in joints or bones (40 percent) Bowel problems such as constipation or diarrhea (39 percent) Neuropathy (36 percent) Cognitive impairment/trouble thinking (brain fog) (31 percent) Pain (29 percent) Depression/mood changes (28) Leg cramps (28 percent) Night sweats (27 percent) Skin irritation and/or changes (dry, itchy skin) (26 percent) Breathing problems such as shortness of breath (25 percent) Loss of sex drive (libido) (21 percent) Only 7 percent of participants reported having no symptoms at all in the past month. These results indicate that although life with blood cancer may be varied, there are some aspects of the condition that might be shared by a large number of individuals. Most are still currently experiencing symptoms as a result of their diagnosis and treatment. The 3rd Blood Cancer In America survey was conducted online from September 2019 through February 2020. 1,919 people completed the survey. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Fatigue is sadly something that is often with me. It comes and goes. I don’t know when it will really hit me. I’ve had such a bad time with it that I have been on every treatment available for chronic myeloid leukaemia to try and find one that doesn’t destroy me so much. It got so bad that I was offered a stem cell transplant for quality of life reasons. And then I was able to access a trial drug with compassionate use as I can’t tolerate the standard dose, so can’t be in a trail, and it was magical! I felt like me again. I had my energy levels back. Fast forward a year and a half My energy is crashing again. This happens when I switch drugs. The impact is accumulative, I never know how long it will take. With this drug though, I’ve had the longest space of time feeling ok with my energy. And it was beginning to get really challenging again and then I was told that if I keep my results, which have been consistently really good, until November, I can come off treatment! So I am keeping going. Even though it’s 6:30 pm and I had 10 hours of sleep last night and I’m exhausted, and I’m really struggling with focus at the moment because I’m tired all the time. I’m going to put up with it. I’m 35 and I’ve basically spent the last 11 years exhausted and unable to live my life properly. I’ve needed between 10 and 12 hours of sleep every night just to get through the next day, well to the next afternoon. I can’t stand up for long periods of time. I worry in social situations about if there will be somewhere that I can sit. Everything takes effort because everything is an effort. And I’m finding it hard to remember the year and a bit I’ve had on this new drug feeling good. Learning to allocate my energy I have to balance every minute of every day. I have to plan everything. Things coming out of nowhere can really unsettle me as I haven’t planned for it. I haven’t allocated energy to it. I don’t know if I will be able to do that as well as everything else I have in the diary for that day. I’m not very good at last minute things because I need to know what the week is like before it happens. So I know how much, or rather, how little I have to do at the weekend to recover so I can get through the next week. And people don’t understand why I am like this. They aren’t that forgiving when I question what social plans to find out exactly what time to meet, or where, or how long whatever it is we are doing will last for. What time it will end. What time I might be in bed so I can calculate how many hours sleep I will get and the impact it will have on tomorrow. In our 3rd Annual Blood Cancer in America survey, over 8 in 10 of respondents reported having experienced fatigue as a symptom of their blood cancer; 93% of those surveyed experienced symptoms in the past month, fatigue being the most common - and this person across the pond gets it. It’s sh*t, I won’t deny that. But I just try and focus on the good days and knowing that when it’s really bad and I’m aware of my eyeballs, can feel every blink, and every cell in my body feels heavy. Tomorrow could be a better day and I just focus on getting into bed at the end of today. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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