ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. Use the menu to see other pages.
Every treatment can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when given the same treatment. This can make it hard to predict how you will feel during treatment.
As you prepare to start treatment for amyloidosis, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. This part of treatment is called “palliative care" or "supportive care.” It is an important part of your treatment plan, regardless of your age or disease.
Coping with physical side effects
Common physical side effects from each treatment option for amyloidosis are described in the Types of Treatment section. Learn more about side effects of amyloidosis and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the disease state, the length and dose of treatment, and your general health.
Talk with your health care team regularly about how you are feeling. It is important to let them know about any new side effects or changes in existing side effects. If they know how you are feeling, they can find ways to relieve or manage your side effects to help you feel more comfortable and potentially keep any side effects from worsening.
You may find it helpful to keep track of your side effects so it is easier to explain any changes with your health care team. Learn more about why tracking side effects is helpful.
Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.
Dietary therapy may be used 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. Although amyloid is a protein, there is no link between amyloidosis and eating protein-rich foods.
Coping with emotional and social effects
You can have emotional and social effects after a diagnosis of amyloidosis. This may include dealing with a variety of emotions, such as anxiety or anger, or managing your stress level. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to a social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about amyloidosis.
You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.
Coping with the costs of care
Treatment can be expensive. It is may be a source of stress and anxiety for people with amyloidosis and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their treatment plan. This can put their health at risk and may lead to higher costs in the future. Patients and their families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations, in a separate part of this website.
Coping with barriers to care
Different groups of people experience different rates of new cancer cases and experience different outcomes from their diagnosis. These differences are called “health disparities.” Disparities are caused in part by real-world barriers to quality medical care and more often negatively affect racial and ethnic minorities, poor people, sexual and gender minorities (LGBTQ+), adolescent and young adult populations, older adults, and people who live in rural areas or other underserved communities.
If you are having difficulty getting the care you need, talk with a member of your health care team or explore other resources that help support medically underserved people.
Caring for a loved one with amyloidosis
Family members and friends often play an important role in taking care of a person with amyloidosis. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves.
Caregivers may have a range of responsibilities on a daily or as-needed basis, including:
Providing support and encouragement
Helping manage symptoms and side effects
Coordinating medical appointments
Providing a ride to appointments
Assisting with meals
Helping with household chores
Handling insurance and billing issues
A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. It may be helpful to ask the health care team how much care will be needed at home and with daily tasks during and after treatment. Use this 1-page fact sheet to help make a caregiving action plan. This free fact sheet is available as a PDF, so it is easy to print.
Talking with your health care team about side effects
Before starting treatment, talk with your doctor about possible side effects. Ask:
Which side effects are most likely?
When are they likely to happen?
What can we do to prevent or relieve them?
Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of amyloidosis.
Looking for More on How to Track Side Effects?
Cancer.Net offers several resources to help you keep track of your symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:
Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of symptoms and side effects.
ASCO Answers Managing Pain: Get this 32-page booklet about the importance of pain relief that includes a pain tracking sheet to help patients record how pain affects them. The free booklet is available as a PDF, so it is easy to print.
ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression, constipation, diarrhea, and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.
The next section in this guide is Follow-up Care. It explains the importance of checkups after you finish amyloidosis treatment. Use the menu to choose a different section to read in this guide.