Amyloidosis: Coping with Side Effects

Approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of amyloidosis, but it may help to know that preventing and controlling side effects is a major focus of your health care team. This is called palliative care, and it is an important part of the overall treatment plan.

Common side effects of amyloidosis

There are possible side effects for every treatment, but patients don’t experience the same side effects when given the same treatments for many reasons. That can make it hard to predict exactly how you will feel during treatment. However, some of the common side effects of amyloidosis and its treatments include:

  • Anemia. Anemia is common in people with amyloidosis, especially those receiving chemotherapy. Anemia is an abnormally low level of red blood cells (RBCs). RBCs have an iron-containing protein called hemoglobin that carries oxygen to all parts of the body. If the level of RBCs is too low, parts of the body do not get enough oxygen and cannot work properly. Most people with anemia feel tired or weak.
  • Risk of infection. A condition called leukopenia occurs when the body does not have enough white blood cells and is less able to fight off infections. Some white blood cells, called neutrophils, can destroy harmful bacteria and fungi. A low level of neutrophils, called neutropenia or a low white blood cell count are more likely to develop an infection that becomes serious.
  • Depression. A normal reaction to an amyloidosis diagnosis is one of shock, disbelief, and denial. Symptoms of anxiety or depression, irritability, and problems with sleep or appetite often follow. Usually, patients begin to feel better within weeks or several months and experience an increased sense of control. However, if these symptoms continue, treatment may be needed.
  • Fatigue. Fatigue is extreme exhaustion or tiredness, and it is a common problem for people with amyloidosis. Patients who feel fatigue often say that even a small effort, such as walking across a room, can seem like too much.

Learn more about common side effects, along with ways to prevent or control them. Side effects depend on a variety of factors, including the type of amyloidosis, the length and dosage of treatment(s), and your overall health.

Talking with your health care team about side effects

Before treatment begins, talk with your doctor about possible side effects of each type of treatment you will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them.

And, ask about the level of caregiving you may need during treatment and recovery, as family members and friends often play an important role in the care of a person with amyloidosis. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your care

During and after treatment, be sure to tell the health care team about the side effects you experience, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the Follow-Up Care section of this guide or talking with your doctor.

The next section in this guide is Follow-up Care, and it explains the importance of check-ups after cancer treatment is finished. Or, use the menu on the side of your screen to choose another section to continue reading this guide.