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Amyloidosis - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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 serious and potentially life-threatening blood disease. Although amyloidosis is not a type of cancer, it may be associated with certain blood cancers like multiple myeloma. The basis of amyloidosis is an abnormal protein called amyloid that builds up in tissues or organs. As the amount of amyloid protein increases in a tissue or organ, it begins to interfere with the tissue or organ’s healthy function. Eventually, this amyloid protein buildup causes symptoms and organ failure.

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

Types of amyloidosis

There are different types of amyloidosis, including the following:

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 (L) chains and are sometimes described as kappa or lambda light chains. AL amyloidosis is not usually associated with another underlying condition, although it can be linked with multiple myeloma, a blood cancer that makes similar abnormal proteins. However, the proteins in myeloma usually do not build up in the tissues or organs.

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 (tiny, bean-shaped organs that fight infection).

Hereditary amyloidosis (ATTR). 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 peripheral sensory and motor neuropathy problems (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 renal (kidney) problems, and types of amyloidosis located in specific areas of the body.

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Amyloidosis - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

ON THIS PAGE: You will find information about how many people learn they have 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.

Source: Brigham and Women’s Hospital. A Patient Guide to Amyloidosis. http://www.brighamandwomens.org/Departments_and_Services/medicine/services/cvcenter/Amyloidosis/patients.aspx. Updated June 19, 2012.

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Amyloidosis - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

ON THIS PAGE: You will find out more about what factors increase the chance of developing this non-cancerous 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, possibly due to a genetic mutation (change) that is passed down from generation to generation.

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Amyloidosis - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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 and clinical presentation can mimic numerous other more common diseases and conditions. If you are concerned about a symptom or sign on this list, please talk with your doctor.

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 wastes 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 arrhythmia (irregular heart beat), 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 (macroglossia), as well as problems with the esophagus, including gastrointestinal reflux disease (GERD).
  • A goiter (a noncancerous swelling of the thyroid gland) 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, a condition known as peripheral neuropathy, may develop. Carpal tunnel syndrome may also occur.

Other general symptoms of amyloidosis include:

Your doctor will ask you questions about the symptoms you are experiencing to help find out the cause of the problem, called a diagnosis. This may include how long you’ve been experiencing the symptom(s) and how often.

If amyloidosis is diagnosed, relieving symptoms and side effects is 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 helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.  

Amyloidosis - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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.

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.

Laboratory tests. Doctors may take samples of the patient’s blood and urine so that tests can be done 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. The sample removed during the biopsy is analyzed by a pathologist (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 will need to stay in the hospital for these tests. Other tests can suggest that amyloid proteins are present, but only a biopsy can make a definite diagnosis.

Bone marrow biopsy and aspiration. These two procedures are similar and often done at the same time. Bone marrow (the soft, spongy tissue that is found inside the center of bones) has both a solid and a liquid part. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. An aspiration removes a sample of fluid with a needle. The sample(s) are then analyzed by a pathologist. 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, and other types of anesthesia (medication to block the awareness of pain) may be used.

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, so when the waves are bounced back to a computer and 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.

The next section helps explain the treatment options for this non-cancerous condition. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.

Amyloidosis - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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 proven 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 treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Your doctor can help you review all treatment options. For more information, see the 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 called a multidisciplinary team, which is especially important to treat amyloidosis because it affects so many different organs.

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), and neurologist (a doctor who focuses on issues involving the brain). Many times, the hematologist will take the lead in coordinating this multidisciplinary team.

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. Take time to learn about 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, alone or used with other drugs, have been shown to work well.

Chemotherapy is the use of drugs to kill 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. During treatment for amyloidosis, chemotherapy is used to destroy abnormal cells in the blood. Systemic chemotherapy may be also delivered through the bloodstream to reach cells throughout the body. Chemotherapy may be given by a medical oncologist (a doctor who specializes in giving chemotherapy to treat cancer) or a hematologist. 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 melphalan (Alkeran) and cyclophosphamide (Cytoxan, Neosar) combined with dexamethasone (multiple brand names) and prednisone (multiple brand names).

Newer drugs being evaluated for amyloidosis include bortezomib (Velcade), as well as lenalidomide (Revlimid) and pomalidomide (Pomalyst).These drugs continue to be studied in clinical trials 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 melphalan, bortezomib, and dexamethasone 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. In addition, melphalan and similar drugs can cause low levels of red blood cells (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 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

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 lower the amount of amyloid proteins being made by the body or 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 unhealthy or damaged bone marrow is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are 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. It is believed that overall survival can be significantly improved with high-dose chemotherapy and peripheral blood stem cell transplantation.  However, many patients are not candidates, due to the severity of the amyloid protein buildup causing other organ dysfunction(s).

Before recommending 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 bone marrow and stem cell transplantation.

Getting care for symptoms and side effects

Amyloidosis and its treatment often cause side effects. An important part of care is relieving a person’s symptoms and side effects. 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 can help a person at any stage of illness. 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, nutritional changes (see above), relaxation techniques, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the disease, such as chemotherapy or surgery. 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 supportive 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 is addressed as quickly as possible. Learn more about palliative care.

If treatment fails

Recovery from amyloidosis is not always possible. If treatment is not successful, it may be called advanced or terminal disease.

This diagnosis is stressful, and this 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 bereavement.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide.  

Amyloidosis - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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.

Doctors and scientists are always looking for better ways to treat patients with amyloidosis. To make scientific advances, doctors create research studies involving volunteers, called 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.

Patients 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.

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.

For specific topics being studied for amyloidosis, learn more in the Latest Research section.

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.

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.

The next section helps explain the areas of research going on today about amyloidosis. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.  

Amyloidosis - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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 (see the Treatment Options section) may be offered to patients more often for amyloidosis.

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current amyloidosis treatments in order to improve patients’ comfort and quality of life.

To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trial databases now. Please note this link will take you outside this guide.

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select 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, 07/2013

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 or supportive care, and it is an important part of the overall treatment plan.

Below are some of the side effects that are common to amyloidosis and its treatments.

Anemia. Anemia is common in people with amyloidosis, especially those receiving chemotherapy. Anemia is an abnormally low level of red blood cells (RBCs). RBCs contain hemoglobin (an iron protein) 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.

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 the most common side effects of amyloidosis and different treatments, 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.

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 psychosocial (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. Learn more about the importance of addressing such needs, 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 After Treatment section or talking with your doctor.

The next section helps explain medical tests and check-ups needed after finishing treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.  

Amyloidosis - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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.

Long-term follow-up care for amyloidosis includes regular and careful monitoring of liver and kidney function. Your health care team will also focus on controlling the underlying disease, if there is one. If applicable, ASCO offers treatment summary forms to help keep track of the treatment you received and develop a survivorship care plan once treatment is completed.

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 the next steps to take in survivorship, including making positive lifestyle changes.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select 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, 07/2013

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.

  • 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?
  • What are my treatment options?
  • Can my symptoms be controlled with medication alone?
  • What clinical trials are open to me?
  • 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 and follow-up care?
  • 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 follow-up tests will I need, and how often will I need them?
  • What support services are available to me? To my family?
  • Whom should I call for questions or problems?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.  

Amyloidosis - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2013

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. Here are a few sections that may get you started in exploring the rest 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.