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Not all cases of multiple myeloma are the same. The disease can vary in how much cancer has built up in the bone marrow, how well it responds to treatment, and how it affects a person’s overall health. Factors such as older age and other health conditions can also affect how the disease progresses.
Myeloma is difficult to cure, but treatment can often keep it under control for many years. Over time, some people reach a point when treatments stop working or the cancer continues to progress despite treatment.
Even when myeloma can no longer be controlled, care continues. Palliative care can help manage symptoms, improve quality of life, and keep you more comfortable with end-stage myeloma.
End-stage myeloma means the cancer can no longer be controlled with treatment and is considered terminal. The term doesn’t refer to an official multiple myeloma stage.
Doctors use staging systems to describe the severity of multiple myeloma and help estimate how the disease will progress. The commonly used Revised International Staging System (R-ISS) has three stages. A newer system called the R2-ISS, which some cancer centers are adopting, divides myeloma into four risk categories.
Even someone classified as being at high risk under the R2-ISS does not necessarily have end-stage myeloma. “End-stage” specifically means that treatment is no longer effective and the disease is in its final stages.
As myeloma worsens, the disease may lead to more severe signs and symptoms. People may experience worsening bone pain and fatigue. Some people develop frequent infections or kidney damage. Various treatments can help lessen these effects.
Many people with cancer also experience mental health changes. Researchers estimate that about 4 out of 10 people living with cancer develop anxiety, and about 2 in 10 people with cancer feel depressed.
As a person with end-stage myeloma approaches the end of life, they may develop new signs or symptoms. These changes can happen at different times and can’t reliably predict exactly when the person will die. Symptoms may include:
During a person’s final days, they may experience additional symptoms. Their breathing may become shallow or irregular, or it may have rattling or gurgling sounds. They may make repetitive movements involuntarily.
At this point, the person may also become confused and not remember the people around them. They may get upset more easily or stop responding to others.
Palliative care and hospice care can help relieve pain and other symptoms, though they may not eliminate them completely. Myeloma can also lead to life-threatening complications, such as kidney failure, anemia, high calcium levels, or severe infections.
Different myeloma treatments have different goals. Some treatments aim to kill cancer cells or keep the myeloma under control. Other treatments, often called palliative care or supportive treatments, aim to 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 seeking disease treatments and focus on feeling as comfortable as possible.
You may continue undergoing treatments — such as chemotherapy, targeted therapy, immunotherapy, stem cell transplants, and radiation therapy — to control your myeloma as much as possible. Systemic treatments like chemotherapy and transplants affect the disease throughout your body, while radiation therapy is local and targets cancer in a specific area. Any treatment can cause side effects and carry risks.
At some point, these treatments will no longer be able to control myeloma. You and your doctor can decide when to change or stop treatment based on your individual goals, your overall health, and whether your doctor believes you’ll benefit from a treatment.
You might decide to stop myeloma treatments altogether if they are no longer effective at killing cancer cells or if you don’t feel well enough to endure their side effects.
Have regular discussions with your healthcare team about what to expect from your current treatment plan. Your doctor can help you determine whether the possible benefits outweigh the potential risks.
Palliative care helps manage the symptoms of multiple myeloma and keep you comfortable. It also helps ease 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 disease treatments are no longer effective. Palliative care specialists can help you better understand myeloma and make treatment decisions.
The palliative treatments you receive, like bone-modifying drugs, blood transfusions, or plasmapheresis, will depend on your myeloma symptoms.
Hospice care is care given 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 in your final weeks or months.
When you begin hospice care, you will stop using other treatments that are meant to help control the myeloma. However, you can continue pain-relieving or symptom-relieving treatments if you choose.
Hospice care also provides support and resources to your loved ones. Nearly half of people with multiple myeloma choose to use hospice care as they approach the end of life.
It’s important to talk with other people about how you’re feeling and what you’re experiencing. You can try talking to a family member, friend, member of your healthcare team, or a religious leader.
Additionally, talking to a mental health professional may be a good option. Therapy may help you learn to cope with your myeloma diagnosis and meet your emotional needs.
There is no one right way to handle end-stage myeloma. Each person with this disease deals with it a little differently. However, you 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. Your doctors and loved ones can use it to guide your medical care if your myeloma reaches the point where you can no longer make these decisions for yourself.
You’re not required to make an advance directive. However, hospice programs, hospitals, and other care agencies are required to tell you about your rights according to the laws of your state and to follow an advance directive if you have one.
An advance directive allows you to make some care decisions ahead of time so that your loved ones and healthcare team know what you want later. This is called a living will. It can include your preferences on:
You can also use an advance directive to designate a person to make decisions for you. Your healthcare team may be able to give you an advance directive form or help you write this document.
If you reach a point where an advance directive is used to guide your treatments, palliative care will continue in order to keep you comfortable and support your well-being as much as possible.
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:
It’s never too early to discuss your goals and wishes with your doctors, caregivers, and loved ones. If you have end-stage multiple myeloma, talk to your care team about what to expect and how you can prepare for the future.
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I’m sorry I can’t talk about this anymore right now. Thank you for understanding.🙂
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