Amyloidosis

Amyloidosis Overview

You are at the center of everything we do at Seattle Cancer Care Alliance (SCCA). Here, we surround you with a team of specialists who work together closely to provide collaborative care and compassionate support throughout your treatment.

Our experts evaluate and treat all types of amyloidosis. We guide you every step of the way, combining our deep clinical expertise with a commitment to meet your unique needs.

Why choose SCCA?

  • Amyloidosis expertise
    Amyloidosis is not considered cancer. But the most common type (light chain amyloidosis, or AL) is caused by abnormal plasma cells. It is similar to cancer of the plasma cells (multiple myeloma) and involves similar treatments. This is why amyloidosis experts, like ours at SCCA, are often cancer doctors (hematologist-oncologists).

  • Experienced diagnosis and care
    Because amyloidosis is so rare, most hematologist-oncologists in the community see only one or two people with this condition in their entire career. At SCCA, we’ve seen more than 300 new patients with primary or secondary amyloidosis in the past five years — experience that translates into state-of-the-art diagnosis and care for you. 

  • Comprehensive amyloidosis treatment
    Team-based care is essential if amyloidosis affects tissues and organs throughout your body, as it often does. SCCA brings together UW Medicine doctors from multiple fields, including hematology/oncology, cardiology, nephrology, neurology and others, to provide multidisciplinary treatment.
  • Advancing new approaches
    Along with offering standard chemotherapies and targeted therapies, we’re involved in amyloidosis clinical trials to develop new treatments, such as amyloid-removing agents. To advance care for patients everywhere, we collaborate with amyloidosis experts at other treatment centers, including Mayo Clinic and Boston University.

  • Bone marrow transplant for amyloidosis
    The Fred Hutch Bone Marrow Transplant Program at SCCA consistently achieves higher-than-expected transplant survival rates. We’ve performed more bone marrow and stem cell transplants than any other institution in the world. Since 2001, we’ve transplanted 60 people with amyloidosis.

  • NCI comprehensive cancer center
    We are a comprehensive cancer center, a designation from the National Cancer Institute that reflects our scientific leadership and the depth and breadth of our research to prevent, diagnose and treat cancer. Our doctors and scientists bring the same commitment to amyloidosis and other blood-related diseases.
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. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells. 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.

Facts

Amyloidosis is a potentially serious and very rare disease that involves abnormal protein (amyloid) building up in your tissues and organs. SCCA offers collaborative amyloidosis treatment from a team of experts who can address the wide range of health care needs you may have.

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.

Providers

At SCCA, you receive care from a team of providers with extensive experience in your disease. Your team includes physicians, a patient care coordinator, a registered nurse, an advanced practice provider and others, based on your needs. You also have access to experts like nutritionists, social workers, acupuncturists, psychiatrists and more who specialize in supporting people with cancer or blood disorders.

Clinical trials

For some people, taking part in a clinical study may be the best treatment choice. Access to clinical studies by researchers at SCCA and our founding organizations Fred Hutch and UW Medicine is one reason many patients come to SCCA. 

Important areas of research include: 

  • New combinations of chemotherapy medicines and steroids
  • Stem cell transplants for amyloidosis
  • Medicines that stimulate the removal of amyloid from the body 
  • For familial amyloidosis, RNA interference therapy that can turn off the production of the abnormal TTR protein by the liver
  • Palliative care to improve your quality of life and comfort 

Our research interests also include studies to better understand the basics of the disease and its risk factors and to help more patients receive a diagnosis earlier.

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. Clinical trial A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis or treatment of a disease. Clinical trial A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis or treatment of a disease. Stem cell A cell from which other types of cells develop. For example, blood cells develop from blood-forming stem cells.

Resources

There are many resources online for learning about your disease. Health educators at the SCCA Patient and Family Resource Center have compiled a list of trusted sources to help you get started.