What can be expected as leukemia progresses?

Leukemia is different from many cancers, as there is no tumor. Rather, the cancerous cells are found throughout the body, in the blood or in bone marrow. Leukemia interferes with the normal production of red cells, white cells, and platelets in the bone marrow. The medications used to treat this disease may also injure the healthy stem cells that produce white blood cells, red blood cells and platelets. It’s common for patients with leukemia to develop anemia (low levels of red cells) and thrombocytopenia (low levels of platelets), and in some cases, leukopenia (low levels of white cells). Red cells and platelets may be replaced by healthy donated cells in the form of blood transfusions. Most patients with leukemia require some transfusions during their care.

Platelet transfusions are common in leukemia, but not everyone needs them. Usually blood can still clot even if the platelet count is low, as long as the platelets are functional. Platelet transfusions are sometimes given if the number gets low or if the person is having distressing symptoms, such as nosebleeds or bleeding gums. If there is no distressing bleeding and the disease is in the final stages, then platelet transfusions may never be necessary.

Red cell transfusions are used to treat low hemoglobin (red cell) counts. When considering the need for a red cell transfusion blood count results are important, but often the focus is on how the person feels. For example, a person can be conscious and able to communicate with a hemoglobin count in the 40s, which is quite low. This is more likely if the decrease in hemoglobin has been gradual and the person has become accustomed to low levels. When hemoglobin is this low, people commonly feel profound fatigue, confusion and short of breath. With good palliative care these symptoms are manageable.

As leukemia progresses, the frequency of transfusions may increase to two or three times a week. Requiring transfusions more frequently is usually considered a milestone. More frequent transfusions usually are not helpful and the patient is likely to live only a few more days, or a very few weeks at most.

When transfusions are needed several times a week, the disease has progressed to the point where other symptoms may diminish quality of life. At this point the immune system is extremely weak and infections are a real threat. Infections can be treated with antibiotics, but without a functioning immune system, they can’t be overcome completely. Also at this point people are very weak overall, have little energy, and so spend most of their time in bed. This does not mean, however, that they can’t still find some quality in their life.

Someone who has leukemia may die from different things. There may be a sudden loss of blood or a stroke, because of the inability of the blood to clot. There may be complications from low hemoglobin levels. Infection is possible. Pneumonia is a common complication because people are at risk of aspiration. Sometimes death comes from a combination of things. Sometimes someone just gradually gets weaker and body systems shut down.

People with leukemia often come to think of transfusions as a lifeline, because it’s the only thing that stands in the way of death. It’s often difficult for people and their families to let go of that lifeline as death approaches. Yet there comes a time when the lifeline no longer works. With good palliative care, the symptoms that may develop at the end of life can be well controlled to keep the person comfortable.