Palliative care, or supportive care, consists of specialized support for people living with a serious health condition, such as myeloma. A palliative care team can help you manage pain, get better sleep, and maintain a healthy weight as you undergo treatment. Palliative care can also assist with administrative hassles such as filling out complex medical forms. In some studies, palliative care has been shown to extend the life span of those living with serious illnesses.
As one MyMyelomaTeam member suggested to another, “You might want to see if your doctor can refer you to 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.”
Whether you’ve just been diagnosed with myeloma or have already undergone extensive treatments, it’s important to know about the different ways palliative care can help throughout your myeloma journey.
Palliative care teams are made up of health care professionals 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.
There’s no need to stop myeloma treatments while receiving palliative care. Unlike hospice (end-of-life 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 may include treatments similar to those used to treat your myeloma. For instance, your care team may discuss such options with you as:
When these are palliative, they are not intended to treat the myeloma, but are instead offered to help manage certain symptoms.
Palliative care isn’t just for people with advanced myeloma. 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.
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 with symptoms, side effects, health complications, medical insurance, or other aspects of life with myeloma.
Myeloma treatments are focused on killing myeloma cells, preventing relapse, and slowing progression. Palliative care, however, is focused on symptom management. People with blood cancer may seek palliative care for issues like bone pain, nerve pain, anemia, fatigue, side effects of chemotherapy, and more. Getting treatment for side effects may even make it easier to stick with myeloma treatments.
For example, a dietitian could help you develop interventions to prevent weight loss, such as eating smaller meals or incorporating high-calorie snacks and supplements into your diet. If bone pain is keeping you from getting a good night’s sleep, a sleep specialist could work with you and your oncologist to discuss your pain medications — such as Janus kinase (JAK) inhibitors — your sleep environment, or other medications to help with sleep. A palliative care team can also help you address both the short-term and lasting effects of cancer treatment.
Palliative care planning for myeloma often includes a focus on your pain management. This can include a wide variety of options, including:
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.
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:
Filling out complicated medical forms, dealing with insurance companies, and finding housing and transportation are all ways a palliative care team can help you overcome challenges to staying on myeloma treatment.
Some palliative care costs are covered by health insurance, while others are not. Services may be provided in several settings, such as:
If you’re a 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.
Scientists have found 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 palliative care team to support you during any stage of life with myeloma.
A myeloma diagnosis doesn’t just affect the person with the condition. 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. 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.
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.
Ask your oncologist for more information about palliative care services to improve your health and well-being while living with myeloma. Because palliative care can help at any stage, even right after you’re diagnosed, there’s no reason to wait to get connected with a palliative care team.
On MyMyelomaTeam, the social network for people living with myeloma and their loved ones, you can ask questions, share your journey with myeloma, or encourage others who share theirs. With more than 17,000 members on MyMyelomaTeam, it won’t be long before you have an online group of supporters who can help you live your best life.
Are you using palliative care services for myeloma? Would you recommend palliative care to other members? Share your experiences in the comments below or by posting on MyMyelomaTeam.