Think back to the time before you received your leukemia diagnosis, started cancer treatment, or found an oncologist. How were you feeling? What made your doctor order a blood test? What clued you and your doctor in on a leukemia diagnosis?
Although many people living with leukemia had no symptoms in the early months of their condition, others can recall feeling “off” in the weeks or months leading up to their diagnosis.
In this article, we highlight MyLeukemiaTeam members’ early signs and symptoms of leukemia — fatigue, pain, and more. Unique symptoms depend on the type and stage of leukemia, but it’s important to know about common early indications that some people may experience.
Debilitating fatigue is one of the most commonly discussed topics on MyLeukemiaTeam — and many members say they experienced this symptom long before receiving a leukemia diagnosis. “I was sleeping 20 hours per day,” one member wrote. “I could hardly get out of bed.”
Another shared a similar sentiment: “Pain and fatigue are what originally sent me to the doctor before my diagnosis. Has anyone else experienced worsening pain and extreme fatigue before treatment?”
Persistent fatigue and weakness are among the most common early signs of leukemia. Symptoms may at first seem related to other chronic (ongoing) or infectious diseases, so people with leukemia — even their health care providers — may overlook this blood cancer as a possible cause.
A likely reason for fatigue is that blood cancer can directly cause anemia. When you’re deficient in red blood cells, less oxygen moves through your body, causing you to feel mental and physical exhaustion before any other symptom.
After getting an official leukemia diagnosis, some members learned to better manage their fatigue. “I’m fatigued on a daily basis but have learned to roll with it and accept it,” one member wrote. “When the body says lie down, I do actually listen to it now and take a power nap.” Fatigue is an early symptom that often persists throughout the disease course, and members share tips to help others live better with this common symptom.
Many MyLeukemiaTeam members reported feeling pain before receiving their leukemia diagnosis. “I had extreme headaches, bone pain from my hips to my feet, and a rash all over my body,” one member said. Another shared, “I had a lot of muscular pain at night.”
According to the Leukemia & Lymphoma Society, bone and joint pain often occur because leukemia cells build up in the bone marrow. On average, 1 in 4 people with leukemia experience bone pain during the early stages of the disease.
Given the many shared experiences with pain, one member offered their hypothesis: “Chronic lymphocytic leukemia (CLL) seems to magnify any kind of preexisting condition. So, if you had chronic pain before your CLL diagnosis, it’s safe to say that it will become magnified.”
People with leukemia face many common comorbidities (co-occurring illnesses), such as infections, diabetes, and heart disease. Sometimes, it’s hard to determine which symptoms come from which condition, especially before a leukemia diagnosis is made.
One MyLeukemiaTeam member shared, “Swollen lymph nodes were my first main issues with acute myeloid leukemia.” At its most severe, this symptom can even lead to others, such as insomnia. “I had a terrible time sleeping with swollen glands near my throat,” another member noted.
Approximately 20 percent of people living with leukemia experience swollen lymph nodes before receiving a diagnosis. This symptom can also occur when fighting an infection or after being given a vaccine. Swollen lymph nodes under the armpit, by the groin, or on the neck show that your immune system is working hard. But in the case of leukemia, the glands often stay swollen past the usual two weeks, are not painful to the touch, and grow over time. They represent your body’s production of cancerous blood cells.
However, this symptom may vary in severity. One member shared their early experience following diagnosis with stage 0 CLL: “I don’t have swollen glands (even though they all ache) or a swollen spleen, according to my scan.”
Brain Fog, Vision Problems, and Other Neurological Symptoms
Leukemia is also known to cause neurological symptoms. One member shared, “I was getting dizzy after aerobic exercise.” Another described suddenly developing brain fog: “I could not get my head into work and really didn’t have the energy to think. Those are still the days that frustrate me the most!” A third described vision changes: “I began getting dry eye with impaired driving vision, as well as side-to-side vision issues.”
What do these symptoms — dizziness, brain fog, and vision problems — have in common? All are tied to leukemia’s effects on the brain.
When leukemia causes white blood cells to multiply exponentially, the blood may flow more slowly through vessels in the brain. This can lead to headaches, vertigo, nausea, vision problems, and even seizures. If these symptoms were out of the ordinary for you, they might have been what prompted you to see a doctor — before you received your leukemia diagnosis.
Sweating and Chills
Some MyLeukemiaTeam members described early problems with body temperature regulation, including night sweats and feeling feverish. “I was sweating profusely followed by getting the chills,” wrote one member. Another said, “I would soak my nightgown and have to change twice during the night.”
The reasons behind temperature regulation problems in leukemia are related to the immune system. You may be fighting off infection more often and intensely as your immune system is weakened by cancer. In addition, your immune system may be trying to kill cancer cells by raising your body’s temperature. Early on, these symptoms might be attributed to other conditions and illnesses.
Overall, it’s hard to distinguish the early symptoms of leukemia from the common cold, chronic pain, or general fatigue. Only in hindsight do many members relate these symptoms to leukemia that, at the time, had not been diagnosed. Sharing stories with your MyLeukemiaTeam support group can help you learn more about your condition and support others who recently received a diagnosis.
By joining MyLeukemiaTeam, the social network and online community for more than 12,000 members living with leukemia, you’ll be able to discuss disease symptoms and other topics.
What were your first symptoms of leukemia? How have your symptoms changed over time? What tips do you have for those who are newly diagnosed? Share your tips and experiences in a comment below or on MyLeukemiaTeam.