Amyloidosis: Coping with Treatment

Approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu.

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. Doctors call this part of treatment “palliative 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 Treatment Options 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.

Sometimes, physical 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

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 as well as physical effects after a diagnosis of amyloidosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. 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.

It is normal to react to a diagnosis of amyloidosis with feelings of shock, disbelief, and denial. You may become irritable, have problems with sleep or appetite, or feel anxious or depressed. Usually, patients begin to feel better in a few weeks or several months after diagnosis. However, if these feelings continue, you should seek further treatment.

Coping with financial effects

Treatment can be expensive. It is often a big 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. Learn more about managing financial considerations, in a separate part of this website.

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.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • 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

Learn more about caregiving.

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 are 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, and social effects of amyloidosis.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of checkups after cancer treatment is finished. Or, use the menu to choose another section to continue reading this guide.