Not all cases of multiple myeloma are the same. Sometimes the cancer is caught early; other times, it is not detected until after the cancer cells have spread and formed multiple tumors. Additionally, treatments sometimes work well, while other times they are less effective. Factors such as older age and other health conditions can also make multiple myeloma harder to treat and lead to a worse outlook.
There is no cure for myeloma, although treatments can often help keep the cancer under control for many years. Many people with this disease eventually reach a point where treatments stop working and can no longer kill myeloma cells. However, other treatments can help improve quality of life and make people with end-stage myeloma more comfortable. Moreover, there are steps people can take to get their affairs in order and ensure they receive their desired end-of-life care.
End-stage myeloma is advanced cancer that has spread around the body. It doesn’t respond to treatment and will eventually lead to death. End-stage cancer may also be called terminal cancer.
End-stage myeloma is not an official multiple myeloma stage. Myeloma stages describe how advanced a case of the condition is. Doctors use staging systems such as the International Staging System to determine which stage of myeloma a person has. Stage 1 myeloma is the earliest stage, and stage 3 myeloma is the most advanced. “End-stage” is a separate term that means that a cancer is in its final stages. People with stage 3 myeloma don’t necessarily have end-stage disease.
As myeloma worsens, it may lead to more severe signs and symptoms. People may experience worsening bone pain and tiredness. Some people develop serious infections, nerve damage, and kidney problems. Various treatments can help lessen these signs and symptoms.
Different myeloma treatments have different goals. Some aim to kill cancer cells or keep the myeloma under control. Others, often called palliative care or supportive treatments, manage symptoms and improve a person’s quality of life.
Ultimately, the treatments that you receive are your decision. Some people may keep trying new or experimental treatments up until the end. Others may decide to stop using these treatments and focus on feeling as comfortable as possible.
You may undergo treatments such as chemotherapy, targeted therapy, immunotherapy, stem cell transplants, and radiation therapy. All of these medications and procedures can help keep myeloma cells under control, but they can also lead to side effects and risks.
At some point, these treatments will no longer be able to control myeloma. Your doctor may recommend that you stop using cancer treatments if:
Have regular discussions with your health care team about what to expect from your current treatment plan. Your doctor can help you determine whether the possible benefits outweigh the potential risks. Deciding to stop using treatments that are intended to stop cancer may be very difficult for some people. Other people may feel relieved once they make the decision.
Palliative or supportive care helps manage the symptoms of multiple myeloma. It also helps improve the social, emotional, spiritual, or financial burdens for people living with myeloma and their loved ones.
Palliative treatments can help during any stage of your myeloma journey. You can use palliative care while pursuing other treatments that aim to control the myeloma. You can also continue to receive palliative treatments even after other treatments are no longer effective. Palliative care specialists can help you better understand myeloma and make treatment decisions.
You may receive different palliative treatments depending on what your myeloma symptoms are. These treatments may include:
Hospice care is care used at the end of life. If you choose to use hospice care, hospice providers can help you feel more comfortable and improve your quality of life. When you begin hospice care, you stop using any other treatments that are meant to help control the myeloma. You can continue using treatments that help control pain or reduce symptoms. Hospice care also provides support and resources to your loved ones. Around half of people with multiple myeloma choose to use hospice care at the end of life.
Many people with cancer experience mental health changes. More than 4 out of 10 people living with cancer experience anxiety, and 1 out of 4 people feel depressed. It is important to talk with other people about how you are feeling and what is going on. You can try talking to a family member, friend, member of your health care team, or a religious leader. A support group or online community such as MyMyelomaTeam can connect you with others who are going through a similar journey. Additionally, going to a mental health care professional, such as a counselor or therapist, may be a good option. Therapy may help you learn to cope with your myeloma diagnosis and meet your emotional health needs. Medication can also help improve mental health for people living with cancer.
There is no one right way to handle end-stage myeloma. Each person with this disease deals with it a little differently. However, people with end-stage myeloma can make certain plans ahead of time that can help make things easier once the end comes.
You may want to consider making an advance directive. An advance directive is a legal document that helps you communicate your end-of-life medical decisions. End-stage myeloma may cause you to reach a point where you can no longer make decisions for yourself. An advance directive allows you to make some care decisions ahead of time so that your loved ones and health care team know what you want later. You can also use an advance directive to designate a person to make decisions for you. Your health care team may be able to give you an advance directive form or help you write this document.
You may also want to take care of other affairs now to plan for the most positive and comfortable experience for you and loved ones. You may want to consider:
Most people with myeloma use palliative treatments at the end of life. These treatments can help lead to a peaceful, pain-free death. Usually, myeloma doesn’t directly lead to death. The cause of death is typically a complication such as kidney failure or a severe infection like pneumonia.
Once a person has a few weeks left, they may start to experience certain signs or symptoms. These may include:
During a person’s final days, they may develop additional symptoms. Their breathing may become slower and louder, and their mouth and lips may dry out. They may not be able to control their bladder or their bowels and their body may make repetitive movements. The person may become confused and not remember the people around them. They may also see or hear hallucinations.
A person’s health care team can help caregivers understand what is going on and recommend ways to keep the person comfortable. Caregivers should know whom to call for any questions or concerns. Members of the person’s health care team or hospice staff can help monitor a person and provide further instructions or suggestions.
If a person passes away at home, caregivers, friends, and family members do not need to call someone right away. They can take their time sitting with their loved one. If you have been working with a hospice provider or home care agency, call them first. If not, a person’s health care team can provide information about whom to notify. Different areas may have different rules regarding proper procedures.
MyMyelomaTeam is the social network for people living with multiple myeloma and their loved ones. On MyMyelomaTeam, more than 16,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.
Are you or a loved one living with end-stage multiple myeloma? Share your experience in the comments below, or start a conversation by posting on MyMyelomaTeam.