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.
- Expertise at SCCA
- Targeted therapy
- Bone marrow transplant
- Supportive and palliative care
- Solid organ transplant
- Clinical studies
- Next steps
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.
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.
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.
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.
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.
Chemotherapy for amyloidosis
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.
Targeted therapy for amyloidosis
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.
Bone marrow transplant for amyloidosis
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.
Supportive and palliative care for amyloidosis
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.
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.
Clinical studies for amyloidosis
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.