ON THIS PAGE: You will read about your medical care after amyloidosis treatment is completed and why this follow-up care is important. Use the menu to see other pages.
Care for people diagnosed with amyloidosis does not end when active treatment has finished. Your health care team will continue to check to see if amyloidosis has come back, manage side effects, and monitor your overall health. This is called follow-up care.
Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead.
Rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent as possible. Learn more about rehabilitation.
Watching for recurrence
One goal of follow-up care is to check for a recurrence, which means that the amyloidosis has come back. For most people with amyloidosis, the condition will recur and their body will start producing abnormal amyloid proteins again. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of their regular follow-up care, but testing recommendations depend on several factors, including the type of amyloidosis first diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called "scanxiety." Learn more about how to cope with this type of stress.
Managing long-term and late side effects
Most people expect to experience side effects when receiving treatment. However, it is often surprising that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.
Talk with your doctor about your risk of developing such side effects based on your individual treatment plan and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them. For example, long-term follow-up care for amyloidosis usually includes regular and careful monitoring of liver and kidney function.
Keeping personal health records
You and your doctor should work together to develop a personalized follow-up care talk with your doctor about sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the treatment you received and develop a follow-up care plan once treatment is completed.
This is also a good time to decide who will lead your follow-up care. Some people continue to see their hematologist, while others transition back to the general care of their primary care doctor or another health care professional. This decision depends on several factors, including side effects, health insurance rules, and your personal preferences.
If a doctor who was not directly involved in your amyloidosis care will lead your follow-up care, be sure to share your treatment summary and follow-up care plan forms with them, as well as all future health care providers. Details about your amyloidosis treatment are very valuable to the health care professionals who will care for you throughout your lifetime.
Making healthy lifestyle choices
People treated for amyloidosis are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, not smoking, eating a balanced diet, and having recommended screening tests. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help rebuild your strength and energy level. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.
The next section offers Questions to Ask the Health Care Team to help start conversations with the health care providers taking care of you. Use the menu to choose a different section to read in this guide.