Amyloidosis

Treatment

Treatment for amyloidosis is complex and must be tailored to each individual, so it’s important to be treated at a specialized center with expertise in this disease. But because amyloidosis is rare, many hospitals and clinics do not have much experience with it.

Seattle Cancer Care Alliance (SCCA) experts offer comprehensive treatment for all types of the disease.

A diagnosis of amyloidosis can feel overwhelming. We have an experienced, compassionate team ready to help. 

Amyloidosis expertise at SCCA

Everything you need is here

We have medical oncologists and hematologists who specialize in amyloidosis; the most advanced diagnostic, treatment and recovery programs; and extensive support.

Hematologist A physician who specializes in diseases of the blood and blood-forming tissues.
Innovative amyloidosis therapies

SCCA is involved in research to better understand amyloidosis and to identify more effective treatments, such as amyloid-removing agents, like CAEL-101. In addition, studies are underway at our center to assess the benefit of adding the monoclonal antibody daratumumab (Darzalex) to standard treatment with the hope that this will speed and deepen the response to chemotherapy.

Antibody A protein made by immune system cells and released into the blood. Antibodies defend the body against foreign substances, such as bacteria. Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies.
Amyloidosis treatment tailored to you

We view treatment as a collaborative effort. Your SCCA doctor will explain all your options and recommend an individualized treatment plan based on your type of amyloidosis as well as your specific medical needs and personal preferences.

Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.
Team-based approach

In addition to your hematologist-oncologist, we’ll involve the other specialists you may need. As part of our multidisciplinary clinic,  we work closely with expert cardiologists, nephrologists, neurologists and geneticists from UW Medicine. Whenever possible, we coordinate your visits so you can see multiple doctors on the same day. These doctors from different fields meet monthly to review the care of our individual amyloidosis patients as a team. 

Additional experts who specialize in treating people with blood disorders and cancer will be involved if you need them — experts like a palliative care professional, social worker, physical therapist or dietitian.

Learn More About Supportive Care Services

Geneticist A scientist who has special training in the study of genes and heredity (the passing of genetic information from parents to their children). A scientist who has special training in the study of genes and heredity (the passing of genetic information from parents to their children). A medical geneticist is a doctor who specializes in diagnosing and treating genetic disorders or conditions. Medical geneticists also counsel individuals and families at risk for certain genetic disorders or cancers. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues.
Ongoing care and support

Throughout treatment, your team provides follow-up care on a schedule tailored to you. The SCCA Survivorship Clinic is also here to help you live your healthiest life. The Amyloidosis Support Groups website can help connect you with support around the country. We are involved in the local Pacific Northwest group. The Amyloidosis Foundation is another helpful resource.

Learn More About Our Survivorship Clinic

Treatment types

Treatment looks different for different people depending on your diagnosis. We tailor your treatment plan to you. Learn more about the treatment types offered at SCCA.

Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.
Chemotherapy

Chemotherapy is a main treatment for primary amyloidosis (AL). Doctors may recommend a single medicine or a combination of medicines to destroy abnormal cells in your blood.

  • Depending on your exact situation, you may receive chemotherapy medicines through an intravenous (IV) line, as an injection just under your skin (subcutaneously) or by mouth. 
  • Some of the chemotherapy medicines most commonly used to treat AL amyloidosis include bortezomib (Velcade), cyclophosphamide and dexamethasone. Melphalan is the primary chemotherapy used in stem cell transplantation for AL amyloidosis.

Your SCCA team will talk with you about the specific medicines we recommend for you, how you’ll receive them, your treatment schedule and what to expect. We’ll also explain how to take the best possible care of yourself during treatment and after, and connect you with medical and support resources throughout SCCA.

Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Cyclophosphamide A drug used to treat many types of cancer. Cyclophosphamide damages the cell’s DNA and may kill cancer cells. It may also lower the body’s immune response. A drug used to treat many types of cancer and a certain type of kidney disease in children. Cyclophosphamide damages the cell’s DNA and may kill cancer cells. It may also lower the body’s immune response. Cyclophosphamide is a type of alkylating agent. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells.
Chemotherapy

Chemotherapy is a main treatment for primary amyloidosis (AL). Doctors may recommend a single medicine or a combination of medicines to destroy abnormal cells in your blood.

Targeted therapy

Targeted therapies are newer treatments that work more selectively than standard chemotherapy. They target a gene or protein responsible for allowing abnormal cells to grow, they seek out and damage abnormal cells, or they prompt your immune system to attack particular cells or substances (also called immunotherapy). 

Several targeted therapies are in use for amyloidosis or are being studied in clinical trials looking for better treatments. They include: 

  • Immunomodulatory medicines — which change the way your immune system responds. These include lenalidomide (Revlimid), pomalidomide (Pomalyst) and thalidomide (Thalomid).
  • Monoclonal antibodies — antibodies made in a lab that attach to specific proteins on cells causing your disease. They include daratumumab (Darzalex), elotuzumab (Empliciti) and the experimental anti-CD38 monoclonal antibody isatuximab. 
  • Proteasome inhibitors — which target enzymes and interfere with the growth of your disease-causing cells. Examples include bortezomib, ixazomib (Ninlaro) and carfilzomib (Kyprolis).
  • Amyloid-removing agents — which stimulate your immune system to clear amyloid that has built up in your body. SCCA has been involved in the VITAL Amyloidosis Study testing amyloid-removing agents called NEOD001 and CAEL-101.
Antibody A protein made by immune system cells and released into the blood. Antibodies defend the body against foreign substances, such as bacteria. Antibody A protein made by immune system cells and released into the blood. Antibodies defend the body against foreign substances, such as bacteria. Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Gene The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein. Immunotherapy A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. A therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection and other diseases. Some immunotherapies only target certain cells of the immune system. Others affect the immune system in a general way. Types of immunotherapy include cytokines, vaccines, bacillus Calmette-Guerin (BCG) and some monoclonal antibodies. Targeted therapy A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. A type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells while causing less harm to normal cells. Some targeted therapies block the action of certain enzymes, proteins or other molecules involved in the growth and spread of cancer cells. Other types of targeted therapies help the immune system kill cancer cells, or they deliver toxic substances directly to cancer cells and kill them. Targeted therapy may have fewer side effects than other types of cancer treatment. Most targeted therapies are either small molecule drugs or monoclonal antibodies.
Targeted therapy

Targeted therapies are newer treatments that work more selectively than standard chemotherapy. They target a gene or protein responsible for allowing abnormal cells to grow, they seek out and damage abnormal cells, or they prompt your immune system to attack particular cells or substances (also called immunotherapy). 

Bone marrow transplant

If you have the most common form of amyloidosis (light chain, or AL type), your doctor may recommend having a peripheral blood stem cell (PBSC) transplant using your own cells (autologous transplant). This is sometimes referred to as a bone marrow transplant, but in a PBSC transplant the stem cells come from your circulating blood rather than your bone marrow. 

  • First, your stem cells are removed and purged of disease-causing cells. 
  • Next, you receive strong chemotherapy to eliminate the disease-causing cells still in your body. 
  • Then, your stem cells are infused back into your bloodstream to restart your body’s ability to form blood cells.

Learn more about the Fred Hutch Bone Marrow Transplant Program at SCCA, including the lifelong support you get through our Long-Term Follow-Up Program for transplant recipients.

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Bone marrow transplant The process of treating disease with high doses of chemotherapy, radiation therapy or both. Bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. The process of treating disease with high doses of chemotherapy, radiation therapy or both. Because this treatment destroys the bone marrow’s ability to produce blood cells, bone marrow or peripheral blood stem cells are given after treatment to help the body make more blood cells. Chemotherapy Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. It may be given alone or with other treatments. Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection, infusion or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy or biologic therapy. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells.
Bone marrow transplant

If you have the most common form of amyloidosis (light chain, or AL type), your doctor may recommend having a peripheral blood stem cell (PBSC) transplant using your own cells (autologous transplant). This is sometimes referred to as a bone marrow transplant, but in a PBSC transplant the stem cells come from your circulating blood rather than your bone marrow. 

Supportive and palliative care

Care for symptoms caused by organ damage and for side effects you might experience from treatment are important for every person with amyloidosis. 

The types of care you need will depend on exactly how you are affected. It is important to receive treatment tailored to your specific situation from a team of specialists, such as a cardiologist and nephrologist, who understand amyloidosis. 

At SCCA your hematologist-oncologist partners with UW Medicine doctors in other specialties to provide multidisciplinary care that’s right for you.

To enhance your quality of life, SCCA’s palliative care team is also here to take of you alongside your amyloidosis doctors — regardless of how advanced your disease is, the amount of time since your diagnosis or the types of treatment you are receiving.

Learn More About Supportive Care Services

Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain.
Supportive and palliative care

Care for symptoms caused by organ damage and for side effects you might experience from treatment are important for every person with amyloidosis. 

Solid organ transplant for amyloidosis

Because of organ damage, some people with amyloidosis become candidates for an organ transplant, such as a liver, kidney or heart transplant. Your SCCA team works closely with solid organ transplant specialists from Transplant Services at University of Washington Medical Center. 

Solid organ transplant for amyloidosis

Because of organ damage, some people with amyloidosis become candidates for an organ transplant, such as a liver, kidney or heart transplant.