People with multiple myeloma at any stage can benefit from palliative care. This type of care can ease myeloma symptoms, help you deal with treatment side effects, and provide emotional support.
As one MyMyelomaTeam member suggested to another, “You might want to see if your doctor can suggest palliative care. They are great with ideas to help you feel better and have a better quality of life.” Another shared, “I really have a great palliative team, and I feel blessed to have them.”
There’s no need to stop myeloma treatments while receiving palliative care. For early-stage myeloma, palliative care can help you come to terms with your diagnosis and prevent the risk factors for complications, like weight loss. In later-stage myeloma, palliative care services can help you stay at home longer and transition to hospice, if needed.
Here are some details you should know about the different types of services available throughout your myeloma journey.
Palliative care, or supportive care, consists of specialized support for people living with a serious health condition. Unlike hospice care, which begins when a person discontinues curative treatment, palliative cancer care works in tandem with myeloma treatments to improve their effectiveness — and help you feel your best.
Palliative care teams can also help you and your loved ones with very practical aspects of your care. They can assist with transportation, help you weigh the pros and cons of your treatment options, and even assist as you and your loved ones plan for the future.
When it comes to myeloma, palliative care may include treatments similar to those used to treat your myeloma. For instance, your care team may discuss such options with you as palliative chemotherapy, radiation, or surgery. When these are palliative, they are not intended to treat the myeloma but rather to help manage certain symptoms.
Some palliative care costs are covered by health insurance, while others are not. Services may be provided in several settings, such as your home, an outpatient cancer care facility, a hospital, a long-term care facility, or your oncology office. If you’re a U.S. veteran, you may have access to free or low-cost palliative care through the U.S. Department of Veterans Affairs. Talk to your oncologist and health insurance carrier to learn more about your options.
Palliative care teams are made up of palliative care specialists who work together to address your concerns and help you understand your treatment options. You may get referrals to meet with various specialists, such as social workers, nurses, registered dietitians, physical therapists, psychiatrists, and massage therapists. People with blood cancer may seek palliative care for issues like bone pain, nerve pain, anemia, fatigue, side effects of chemotherapy, and more.
Palliative care planning for myeloma often includes a focus on your pain management. This can include a wide variety of options, including at-home infusions, medication distributed via a patch on the skin, treatments for nerve damage (if you’ve experienced it), and more. Your palliative care team will work with you and your clinicians to determine the best pain management approach for you and then help administer it.
Palliative care can help you improve your strength and energy levels so you can keep up with the demands of daily life. In some studies, palliative care has also been shown to extend the lifespan of those living with serious illnesses. Whether you’ve just been diagnosed with myeloma or have already undergone extensive treatments, ask your oncologist for more information about palliative care services to improve your health and well-being.
As part of your palliative care program, a social worker can help you manage various aspects of living with myeloma. Some helpful things they can do include:
A myeloma diagnosis doesn’t just affect the individual. Often, loved ones and caregivers need support and resources as well. In addition to providing emotional support, palliative care can help family members with practical advice about how to manage day-to-day responsibilities and help you manage your symptoms.
Filling out complicated medical forms, dealing with insurance companies, and finding housing and transportation are all potential topics of conversation families can discuss with a palliative care team. By involving a palliative care team early on, you’ll give yourself and your loved ones valuable support and easy access to assistance if unexpected or sudden changes occur.
Scientists studying myeloma have said that fatigue, sleep, pain, and mood are intertwined in people with multiple myeloma. For example, pain from multiple myeloma can interfere with sleep, which can lead to mood problems. In addition, anxiety and depression are common responses to health issues and may make individuals feel isolated and fatigued. Trained mental health care providers are an essential part of the health care team to support you during any stage of life with myeloma.
Palliative care providers can also help your loved ones. It can be stressful loving and caring for someone with myeloma, and even the most resilient people can benefit from some added support. The palliative care team can help those closest to you come to terms with your diagnosis and learn to manage your care while also taking care of themselves.
For some people, having a health condition like myeloma brings up the desire to explore spirituality or religion as a source of support or to explore a deeper meaning and understanding of life. Depending on your personal needs and beliefs, chaplains and other religious leaders can be included on your palliative care team.
On MyMyelomaTeam, the social network for people living with myeloma and their loved ones, you can ask questions, share your own journey with myeloma, or encourage others who share theirs. With more than 15,000 members on the MyMyelomaTeam, it won’t be long before you have an online group of supporters who can help you live your best life.
Have you had experience with palliative care for myeloma? Share your story in the comments below or by posting on MyMyelomaTeam.