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Amyloidosis - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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. 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. “Systemic” means that the deposits may be found 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. Because it is such a rare disorder, it has been difficult to study. However, doctors and researchers have begun to understand more about amyloidosis over the past few decades. Research continues to uncover 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, which are a type of protein that fights infection. In AL amyloidosis, the light chain proteins are misshapen and produced in excess. They deposit in tissues and can damage 1 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. AA amyloidosis is also called “secondary amyloidosis” or “inflammatory 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, and 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 amyloidosis. Hereditary amyloidosis is rare. It can be passed from generation to generation within a family. The proteins produced in hereditary amyloidosis may cause problems with the heart and may cause 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 beta-2 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. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide.

Amyloidosis - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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.

Because amyloidosis is rare, the diagnosis is often delayed or the condition is not diagnosed. Therefore, it is difficult to know exactly how many people are affected by this disease. However, it is thought 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 than AL amyloidosis.

It is important to remember that statistics on how many people are diagnosed with amyloidosis are an estimate. So, your own risk may be different. Doctors cannot say for sure how long anyone will live with amyloidosis. Learn more about understanding statistics.

Source: Brigham and Women’s Hospital, September 2015: A Patient Guide to Amyloidosis.

The next section in this guide is Risk Factors. It explains what factors may increase the chance of developing this disease. Or, use the menu to choose another section to continue reading this guide. 

Amyloidosis - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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.

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. 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 in women.

  • Other diseases. As explained in the Introduction, 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. It explains what body changes or medical problems this disease can cause. Or, use the menu 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, 08/2016

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.

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 have any of these changes. Or, the cause of a symptom may be another medical condition. All of these factors can make diagnosing amyloidosis challenging because the symptoms may be similar to those of 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:

  • Kidneys. 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. Decreased urine output and changes in creatinine clearance tests, a blood test to measure kidney function, may be present.

  • Liver. Amyloidosis may cause the liver to grow larger and affect its ability to function normally. This may cause pain in the upper abdomen, swelling in the abdomen, and changes in liver enzymes that can be found using blood tests.

  • Heart. Amyloidosis of the heart may cause an irregular heartbeat, called an arrhythmia; enlarge the heart; and cause poor heart function, resulting in fluid buildup, an irregular heartbeat, shortness of breath, or chest pain.

  • Gastrointestinal tract. Amyloidosis of the gastrointestinal tract may cause problems with the digestion and absorption of food nutrients, diarrhea or constipation, bleeding, blockages, and a thickened tongue, called macroglossia. It may also cause problems with the esophagus, including gastroesophageal reflux disease (GERD).

  • Thyroid gland. Amyloidosis of the thyroid gland may cause goiter, a noncancerous swelling of the thyroid gland.

  • Lungs. Amyloidosis of the lungs may cause problems with breathing, including shortness of breath.

  • Nervous system. Disorders of peripheral nerves are the most common neurological complications of amyloidosis. Patients may experience painful paresthesias (unusual sensations), numbness and balance difficulties, vomiting, diarrhea, constipation, sweating, or sexual problems. 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:

  • Fatigue, which is extreme exhaustion or tiredness. 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. 

  • Unexplained weight loss

  • Anemia, which is a low level of red blood cells

  • Weak hand grip, which may arise from carpal tunnel syndrome

  • Skin changes, such as a rash around the eyes

  • Clay-colored stools

  • Joint pain

  • Risk of infection. People with AL amyloidosis are at increased risk of getting an infection. This is because this type of amyloidosis causes abnormalities in plasma cells. Plasma cells produce immunoglobulins, which help fight 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. People with leukopenia or neutropenia, a low level of neutrophils, are more likely to develop a serious infection.

If you are concerned about any changes you experience, 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. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide.

Amyloidosis - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. To see other pages, use the menu.

Doctors use many tests to find, or diagnose, amyloidosis. Doctors may also do tests to learn which treatments could work best. A biopsy is the only sure way for the doctor to diagnose 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. Not all tests listed below will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

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.

  • Bone marrow aspiration and biopsy. These 2 procedures are similar and often done at the same time to examine the bone marrow. A common site for bone marrow biopsy and aspiration is the posterior iliac crest, a part of the pelvic bone located in the lower back. Bone marrow is the spongy tissue inside your bones. It has both a solid and a liquid 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).

  • 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. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. When amyloidosis is suspected, tissue samples are most often 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. When the sound 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 used 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.

The next section in this guide is Treatment Options. Or, use the menu 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, 08/2016

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.

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

This section tells you the treatments that are the standard of care for amyloidosis. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, 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. This is especially important because amyloidosis affects so many different organs. This is called a multidisciplinary team.

The treatment team often includes these experts:

  • Hematologist. A doctor who specializes in blood disorders

  • 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

  • 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.

Medications used to treat amyloidosis

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

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 hematologist or a medical oncologist, a doctor who specializes in giving chemotherapy to treat cancer.

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 1 drug at a time or combinations of different drugs at the same time.

Some of the 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).

Side effects of chemotherapy

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. Some types of chemotherapy may cause uncommon long-term side effects, including damage to the bone marrow and other organs.

Anemia is common in people with amyloidosis, especially those who are receiving chemotherapy, such as melphalan. 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.

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.

Targeted therapy

Targeted therapy is a treatment that targets specific genes, proteins, or the tissue environment that contributes to the development of amyloidosis. This type of treatment blocks the growth and spread of abnormal cells while limiting damage to healthy cells.

Recent studies show that not all abnormalities have the same targets. To find the most effective treatment, your doctor may run tests to identify genes, proteins, and other factors. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.

For amyloidosis, targeted therapies include anti-angiogenesis therapy, monoclonal antibodies, and proteasome inhibitors.

  • Immunomodulatory drugs. Drugs in this class include lenalidomide (Revlimid), pomalidomide (Pomalyst), and thalidomide (Synovir, Thalomid).

  • Monoclonal antibodies. A monoclonal antibody is a type of targeted therapy. It recognizes and attaches to a specific protein in the abnormal cells, and it does not affect cells that don’t have that protein. Drugs in this class include daratumumab (Darzalex) and elotuzumab (Empliciti). A second type of monoclonal antibody directly targets the amyloid itself. There are currently several of these antibodies in clinical trials.

  • Proteasome inhibitors. Proteasome inhibition is a type of targeted therapy. The drugs in this class target specific enzymes called proteasomes that digest proteins in the cells. This class includes bortezomib (Velcade), ixazomib (Ninlaro), and carfilzomib (Kyprolis).

Researchers continue to study these drugs to find out how well each treats amyloidosis. These drugs do not reverse the buildup of amyloid proteins in tissues or organs. However, studies researching the combination of bortezomib, dexamethasone, and melphalan have shown that they may help the organs affected by amyloidosis work better.

Recent studies have started to examine the role of treatments that can improve organ function by directly targeting the amyloid deposits. This type of treatment is still being studied in clinical trials.

Side effects of targeted therapy

Targeted therapy may cause different side effects from those usually linked with chemotherapy. Patients receiving targeted therapy may develop skin, hair, nail, and/or eye problems. Learn more about the skin reactions to targeted therapy.

Surgery

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.

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 some normal 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 allow 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 cannot receive this treatment because the amyloid protein buildup has affected the function of other organs.

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 the 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 disease, 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. 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 6 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. It offers more information about research studies that are focused on finding better ways to care for people with amyloidosis. Or, use the menu 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, 08/2016

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.

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 tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. 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 can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying 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 the disease.

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. It explains areas of scientific research currently going on for amyloidosis. Or, use the menu 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, 08/2016

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.

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 Treatment. 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 to choose another section to continue reading this guide.

Amyloidosis - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2016

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.

Every treatment can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when given the same treatment. This can make it hard to predict how you will feel during treatment.

As you prepare to start treatment for amyloidosis, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or disease.

Coping with physical side effects

Common physical side effects from each treatment option for amyloidosis are described in the Treatment Options section. Learn more about side effects of amyloidosis and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the disease state, the length and dose of treatment, and your general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late 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.

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. Although amyloid is a protein, there is no link between amyloidosis and eating protein-rich foods.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a diagnosis of amyloidosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

It is normal to react to a diagnosis of amyloidosis with feelings of shock, disbelief, and denial. You may become irritable, have problems with sleep or appetite, or feel anxious or depressed. Usually, patients begin to feel better in a few weeks or several months after diagnosis. However, if these feelings continue, you should seek further treatment.

Coping with financial effects

Treatment can be expensive. It is often a big source of stress and anxiety for people with amyloidosis and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their treatment plan. This can put their health at risk and may lead to higher costs in the future. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with amyloidosis

Family members and friends often play an important role in taking care of a person with amyloidosis. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of amyloidosis.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of checkups after cancer treatment is finished. Or, use the menu 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, 08/2016

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.

After treatment for amyloidosis ends, talk with your doctor about developing a follow-up care plan. Your follow-up care may include regular physical examination, medical tests, or both. Doctors want to keep track of your recover in the months and years ahead. Your health care team will also focus on controlling the underlying disease, if there is one. Learn more about the importance of follow-up care.

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 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 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, 08/2016

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.

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 available for 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?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • 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?

  • If I’m worried about managing the costs of care, who can help me?

  • What support services are available to me? To my family?

  • Whom should I call with 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 leading 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. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu 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, 08/2016

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.

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 to select another section to continue reading this guide.