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Amyloidosis - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find some basic information about this disease, which is not cancer, and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Amyloidosis. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

About amyloidosis

Amyloidosis is a rare and serious protein deposition disease. It is caused by an abnormal protein called amyloid that builds up in tissues or organs. As the amount of amyloid protein deposits increase in a tissue or organ, they interfere with the tissue or organ’s healthy function. Eventually, the amyloid protein deposits cause symptoms and organ failure. Amyloidosis is sometimes fatal.

Amyloid protein deposits, or amyloidosis, may be localized to organs, such as the lung, skin, bladder, or bowel, or they can be systemic, occurring throughout the body. Systemic amyloidosis is the most common. Although amyloidosis is not a type of cancer, it may be associated with certain blood cancers like multiple myeloma.

Amyloidosis is a very rare disorder, occurring in only one to two people out of every one million individuals. Because it is such a rare disorder, it has been difficult to study. However, doctors and researchers have begun to understand more about amyloidosis throughout the past few decades, and research continues to explain more about this disorder.

Types of amyloidosis

There are different types of amyloidosis, including the following:

  • Light chain (AL) amyloidosis. This is the most common type of amyloidosis in the United States. The amyloid proteins that build up in the tissues in this condition are known as light chains. They can either be kappa or lambda light chains. AL amyloidosis is a disorder of the plasma cells. Plasma cells are a type of white blood cell responsible for the production of immunoglobulins or antibodies, a type of protein that fights infection. In AL amyloidosis, these proteins are misshapen and produced in excess. They deposit in tissues, causing organ damage. AL amyloidosis can affect one or more organs. The heart, kidneys, nerves, and gastrointestinal system are the most common organs affected. Because AL amyloidosis is associated with the overproduction of plasma cell proteins, it is linked to multiple myeloma.
  • Autoimmune (AA) amyloidosis. In this condition, the amyloid protein that builds up in the tissues is called the A protein. AA amyloidosis is associated with some chronic diseases, such as diabetes, tuberculosis, rheumatoid arthritis, or inflammatory bowel disease. It may also be linked to aging. AA amyloidosis can affect the spleen, liver, kidneys, adrenal glands, and lymph nodes. Lymph nodes are tiny, bean-shaped organs that fight infection. 
  • Hereditary or familial (AF) amyloidosis. Hereditary amyloidosis is rare. It is a specific type of amyloidosis that can be passed down from generation to generation within a family. It may cause issues relating to the central nervous system, carpal tunnel syndrome, and eye abnormalities. The most common subtypes involve a protein called transthyretin (TTR).

This section covers AL, AA, and hereditary amyloidosis. Other types of amyloidosis include β2 microglobulin amyloidosis, which occurs in some patients with chronic kidney problems, and types of amyloidosis located in specific areas of the body.

The next section in this guide is Statistics, and it helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find information about how many people are diagnosed with this condition each year. To see other pages, use the menu on the side of your screen.

Because amyloidosis is rare, the diagnosis is often delayed or the condition goes undiagnosed. Therefore, it is difficult to know exactly how many people are affected by this disease. However, researchers estimate that between 1,500 and 2,500 people develop AL amyloidosis each year in the United States. Hereditary and AA amyloidosis are much less common.

Cancer statistics should be interpreted with caution. Learn more about understanding statistics.

Source: Brigham and Women’s Hospital. A Patient Guide to Amyloidosis. Updated July 8, 2014.

To continue reading this guide, use the menu on the left side of your screen to choose another section.

Amyloidosis - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this condition. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing a disease. Although risk factors often influence the development of a disease, most do not directly cause the disease itself. Some people with several risk factors never develop amyloidosis, while others with no known risk factors do.

Most people who develop amyloidosis have no known risk factors, and the cause is often not known. The following factors may raise a person’s risk of developing amyloidosis:

  • Age. The risk of amyloidosis increases as a person gets older. For AL amyloidosis, the majority of people diagnosed are older than 40.
  • Gender. Amyloidosis is more common in men than women.
  • Other diseases. As explained in the Overview, amyloidosis is sometimes linked with another disease. For instance, research shows that 12% to 15% of people with multiple myeloma also develop AL amyloidosis.
  • Family history. Hereditary amyloidosis can run in families. This may be due to a genetic change, called a mutation, that is passed down from generation to generation.

The next section in this guide is Symptoms and Signs, and it explains what body changes or medical problems this disease can cause. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

The symptoms of amyloidosis can vary widely, depending on the specific organ or number of organs affected by the buildup of amyloid protein(s). People with amyloidosis may experience the symptoms or signs listed below. Sometimes, people with amyloidosis do not show any of these symptoms, or these symptoms may be caused by another medical condition. All of these factors challenge doctors to make a timely and accurate diagnosis of amyloidosis because the symptoms may be similar to numerous other diseases and conditions that are more common than amyloidosis.

Symptoms of amyloidosis are usually determined by the organ or function that is affected by the protein buildup. For example:

  • Amyloidosis in the kidneys will reduce the kidneys’ ability to filter waste and break down proteins. As a result, large amounts of protein may be found in the urine, causing “foamy” urine. The kidneys may even stop working.
  • Amyloidosis may cause the liver to greatly increase in size and function abnormally.
  • Amyloidosis of the heart may cause an irregular heartbeat, called an arrhythmia, enlarge the heart, and cause poor heart function. 
  • Amyloidosis of the gastrointestinal tract may cause problems with the digestion and absorption of food nutrients, bleeding, blockages, and a thickened tongue, called macroglossia, as well as problems with the esophagus, including gastrointestinal reflux disease (GERD).
  • A noncancerous swelling of the thyroid gland, called a goiter, may be caused by amyloidosis of the thyroid gland.
  • Problems breathing, including shortness of breath, may occur from amyloidosis in the lungs.
  • Numbness, tingling, or weakness in the arms or legs may develop. This condition is known as peripheral neuropathy. Carpal tunnel syndrome may also occur.

Other general symptoms of amyloidosis include:

If you are concerned about one or more of the symptoms or signs on this list, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If amyloidosis is diagnosed, relieving symptoms remains an important part of your care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis, and it explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Many tests may be used to diagnose amyloidosis and find out which parts of the body are affected. Some tests may also determine which treatments may be the most effective. A biopsy is the only way to make a definitive diagnosis of amyloidosis. Imaging tests may be used to find out whether organs, such as the heart or kidneys, are affected.

This list describes options for diagnosing this condition, but not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of disease suspected
  • Signs and symptoms
  • Previous test results

In addition to a physical examination, the tests listed below may be used to diagnose amyloidosis. After these diagnostic tests are done, your doctor will review all of the results with you.

  • Laboratory tests. Doctors may take samples of the patient’s blood and urine to run tests to learn more about the patient’s disease and general health.
  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that amyloid proteins are present, but only a biopsy can make a definite diagnosis.  The sample removed during the biopsy is analyzed by a pathologist. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A sample may be taken from abdominal fat or bone marrow (see below). A sample may also be taken from the liver, nerves, heart, kidneys, or rectum. However, these are more invasive procedures, and a patient may need to stay in the hospital for these tests.
  • Ultrasound. An ultrasound uses sound waves to create a picture of the internal organs. Areas affected by amyloid protein make different echoes of the sound waves than healthy tissue does. Therefore, when the waves bounce back to the computer and are changed into images, the doctor can find these areas inside the body. An ultrasound of the abdominal area may be necessary to look for enlarged organs.
  • Heart evaluation. A heart evaluation, including an electrocardiogram (EKG or ECG) and an echocardiogram (echo), will look for structural abnormalities in the heart and examine the motion of the walls of the heart.
  • Bone marrow aspiration and biopsy. These two procedures are similar and often done at the same time to examine the bone marrow. Bone marrow has both a liquid and a solid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle.

    A pathologist then analyzes the sample(s). A common site for a bone marrow biopsy and aspiration is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand. Other types of anesthesia may also be used to block the awareness of pain.

The next section in this guide is Treatment Options. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will learn about the different ways doctors use to treat people with this condition. To see other pages, use the menu on the side of your screen.

Often, the most effective treatment for amyloidosis is the treatment and control of the underlying disease, if there is one.

This section outlines treatments that are the standard of care (the best known treatments available) for amyloidosis. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study to test a new approach to treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Your doctor can help you review all treatment options. For more information, see the About Clinical Trials and Latest Research sections.

Treatment overview

Different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments, which is especially important because amyloidosis affects so many different organs. This is called a multidisciplinary team.

The treatment team is often made up of a:

  • Cardiologist, a doctor who treats heart conditions
  • Gastroenterologist, a doctor who specializes in conditions of the gastrointestinal tract
  • Pulmonologist, a doctor who specializes in conditions of the lungs
  • Nephrologist, a doctor who treats kidney problems
  • Hematologist, a doctor who specializes in blood disorders
  • Neurologist, a doctor who focuses on issues involving the brain and nervous system

Many times, the hematologist will take the lead in coordinating this multidisciplinary team. Health care teams may also include a variety of other health care professionals, including physician assistants, nurses, social workers, pharmacists, counselors, dietitians, and others.

Descriptions of the most common treatment options for amyloidosis are listed below. Treatment options and recommendations depend on several factors, including the type of amyloidosis, the type of underlying disease, possible side effects, and the patient’s preferences and overall health. Your care plan will also include treatment for symptoms and side effects. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Medication and chemotherapy

Medication may be used to control the problems associated with amyloidosis. Steroids have been shown to work well, and they are typically combined with other drugs.

Chemotherapy is the use of drugs to destroy abnormal cells, usually by stopping the cells’ ability to grow and divide. It is most commonly used to treat cancer; however, chemotherapy is also useful for other conditions, including amyloidosis. Chemotherapy may be given by a medical oncologist, a doctor who specializes in giving chemotherapy to treat cancer, or a hematologist.

During treatment for amyloidosis, chemotherapy is used to destroy abnormal cells in the blood. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle, a shot under the skin, or a pill or capsule that is swallowed (orally).

A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

Some of the most common types of chemotherapy used to treat amyloidosis are cyclophosphamide (Cytoxan, Neosar) and melphalan (Alkeran) combined with dexamethasone (multiple brand names) and prednisone (multiple brand names).

Newer drugs being evaluated for amyloidosis include bortezomib (Velcade), lenalidomide (Revlimid), and pomalidomide (Pomalyst). Researchers continue to study these drugs to find out how well each one treats amyloidosis. Although no known therapy can reverse the buildup of amyloid proteins in tissues or organs, studies researching the combination of bortezomib, dexamethasone, and melphalan have shown that they may help the organs affected by amyloidosis work better.

The side effects of chemotherapy depend on the individual and the dose used, but they can include nausea, vomiting, and fatigue. These are generally manageable when they do occur, and they usually go away once treatment is finished. In addition, melphalan and similar drugs may lower the level of red blood cells, causing anemia. Although uncommon, some types of chemotherapy may cause long-term side effects, including damage to the bone marrow and other organs.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat diseases are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.


Surgery used to treat amyloidosis may include organ transplantation. Liver transplantation has been effective in treating certain types of hereditary amyloidosis. Kidney and heart transplantation may also work well. However, organ transplantation may not be appropriate for all patients, especially those who have large amounts of amyloid proteins that have been deposited in their organs. Talk with your doctor or a center with expertise in organ transplantation about your options.

Dietary therapy

Dietary therapy may be used to reduce the effect of the amyloidosis on a specific part of the body. This means doctors will recommend what to eat and drink and what to avoid. For example, if amyloidosis affects the heart or kidneys, a low-sodium diet may be recommended. It is important to note that, even though amyloid is a protein, there is no link between amyloidosis and eating protein-rich foods.

Stem cell transplantation/bone marrow transplantation

A bone marrow/stem cell transplant is a medical procedure in which the plasma cells in the bone marrow that produce amyloid protein are first destroyed by high doses of chemotherapy and then replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a peripheral blood stem cell transplant, rather than bone marrow transplant, because it is the stem cells collected from the bloodstream that are typically being transplanted, not the actual bone marrow tissue.

For some people with amyloidosis who have preserved organ function, peripheral blood stem cell transplantation may be useful. During this procedure, the patient is given high doses of chemotherapy to destroy blood cells that are making the amyloid proteins. The patient then receives healthy peripheral blood stem cells, which allows the body to start making healthy blood cells again. Survival can be significantly improved with high-dose chemotherapy and peripheral blood stem cell transplantation.  However, many patients are not candidates because of the severity of the amyloid protein buildup causing other organ dysfunction(s).

Before recommending stem cell transplantation, doctors will talk with the patient about the risks of this treatment and consider several other factors, such as the type of disease, results of any previous treatment, and patient’s age and general health.

Learn more about the basics of stem cell and bone marrow transplantation.

Getting care for symptoms and side effects

Amyloidosis and its treatment often cause side effects. Relieving a person’s symptoms and side effects is an important part of care. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed.

People often receive treatment for amyloidosis and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, dietary therapy (see above), relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the disease, such as chemotherapy. Talk with your doctor about the goals of each treatment in your treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care

If treatment fails

Recovery from amyloidosis is not always possible. If the disease cannot be cured or controlled, it may be called advanced or terminal.

This diagnosis is stressful, and advanced disease is difficult to discuss for many people. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced disease and who are expected to live less than six months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials, and it offers more information about research studies that are focused on finding better ways to care for people with amyloidosis. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with amyloidosis. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was previously tested in clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to surgery, and new methods of treatment. Patients who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and managing the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating amyloidosis. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with amyloidosis.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard therapy when they are used. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in clinical trials.

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for many types of serious conditions. For specific topics being studied for amyloidosis, learn more in the Latest Research section.

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific diagnosis.

In addition, this website offers free access to a video-based educational program about clinical trials, located outside of this guide.

The next section in this guide is Latest Research, and it explains areas of scientific research currently going on for amyloidosis. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will read about the scientific research being done now to learn more about this condition and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about amyloidosis, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

  • Combination chemotherapy/other medication. New combinations of steroids and chemotherapy are being studied to treat amyloidosis.
  • Stem cell transplantation. Based on research in some medical centers, stem cell transplantation may be offered to patients more often for amyloidosis. See the Treatment Options section for more information.
  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current amyloidosis treatments to improve patients’ comfort and quality of life.

Looking for more about the latest research?

If you would like additional information about the latest areas of research regarding amyloidosis, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Side Effects, and it offers some guidance in how to cope with the physical, emotional, and social changes that amyloidosis and its treatment can bring. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Coping with Side Effects

This section has been reviewed and 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.

Amyloidosis - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will read about your medical care after amyloidosis treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

After treatment for amyloidosis ends, talk with your doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your recovery for the coming months and years. Your health care team will also focus on controlling the underlying disease, if there is one.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors 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 the type of cancer, 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 plan. Be 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 family 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 him or her, 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 Doctor to help start conversations with your health care team. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • Can you explain my pathology report (laboratory test results) to me?
  • What organs, tissues, and/or parts of my body are affected?
  • How will this type of amyloidosis progress? Is it possible to slow down this disease? Is it curable?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?
  • Can my symptoms be controlled with medication alone?
  • What clinical trials are open to me? Where are they located, and how do I find out more about them?
  • What treatment plan do you recommend? Why?
  • What is the goal of each treatment? Is it to eliminate the underlying disease, help me feel better, or both?
  • Who will be part of my health care team, and what does each member do?
  • Who will be coordinating my overall treatment?
  • What are the possible side effects of this treatment, both in the short term and the long term?
  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
  • If I’m worried about managing the costs related to my medical care, who can help me with these concerns?
  • Could this treatment affect my sex life? If so, how and for how long?
  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?
  • What support services are available to me? To my family?
  • Whom should I call for questions or problems?
  • Is there anything else I should be asking?

Questions to ask about planning follow-up care

  • Are there any signs and symptoms I should watch for?
  • What long-term side effects or late effects are possible based on the treatment I received?
  • What follow-up tests will I need, and how often will I need them?
  • How do I get a treatment summary and follow-up care plan to keep in my personal records? 
  • Who will be coordinating my follow-up care?
  • What support services are available to me after treatment has finished? To my family?

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.

Amyloidosis - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 02/2015

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about care and treatment for people with amyloidosis and other serious medical conditions. This is the final page of Cancer.Net’s Guide to Amyloidosis. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with amyloidosis and other potentially life-threatening conditions, both for the patient and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Amyloidosis. Use the menu on the side of your screen to select another section to continue reading this guide.