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.
Fred Hutchinson Cancer Center 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.
We have medical oncologists and hematologists who specialize in amyloidosis; the most advanced diagnostic, treatment and recovery programs; and extensive support.
Fred Hutch 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.
We view treatment as a collaborative effort. Your Fred Hutch physician 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 physicians on the same day. These physicians 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.
Throughout treatment, your team provides follow-up care on a schedule tailored to you. The Fred Hutch 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 is a main treatment for primary amyloidosis (AL). Physicians may recommend a single medicine or a combination of medicines to destroy abnormal cells in your blood.
Your Fred Hutch 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 Fred Hutch.
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:
If you have the most common form of amyloidosis (light chain, or AL type), your physician 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.
Learn more about the lifelong support you get through our Long-Term Follow-Up Program for transplant recipients.
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 Fred Hutch your hematologist-oncologist partners with UW Medicine physicians in other specialties to provide multidisciplinary care that’s right for you.
To enhance your quality of life, Fred Hutch’s palliative care team is also here to take of you alongside your amyloidosis physicians — regardless of how advanced your disease is, the amount of time since your diagnosis or the types of treatment you are receiving.
Because of organ damage, some people with amyloidosis become candidates for an organ transplant, such as a liver, kidney or heart transplant. Your Fred Hutch team works closely with solid organ transplant specialists from Transplant Services at UW Medical Center.