People with lymphoma at any stage can benefit from palliative care. This type of care can help ease lymphoma symptoms, assist with managing treatment side effects, and help you to feel more supported mentally and emotionally.
Many MyLymphomaTeam members have recommended palliative care to one another. When one member was experiencing extreme nausea, another said, “Ask for a referral to a palliative care team. Your hospital should have one. They focus on relief of symptoms; don’t get it confused with hospice.” Another member wrote, “I would suggest you ask your doctor for a palliative care referral. They are nurses who can come to the home and suggest medication that can help your husband feel better.”
There’s no need to stop lymphoma treatments while receiving palliative care. For early-stage lymphoma, palliative care can help you come to terms with your diagnosis and prevent the risk factors for complications like weight loss. For later-stage and more advanced cancer, palliative medicine services can allow you to receive care from the comfort of your home and transition to hospice, or end-of-life care, if needed. Here are some details you should know about the different types of palliative care services available throughout your lymphoma journey.
Palliative care, or supportive care, consists of specialized support for people living with serious health conditions. It is provided along with the standard care for a person’s condition, like oncology care for lymphoma. Unlike hospice care, which begins when a person discontinues curative treatment, palliative cancer care works with lymphoma treatments to improve the treatments’ effectiveness and maintain quality of life.
Palliative care teams can also help you and your loved ones manage the practical aspects of your care. They can assist with transportation, help you weigh the pros and cons of your treatment options, and even assist with planning for the future.
When it comes to lymphoma, palliative care may include therapies similar to those used to treat your lymphoma. For instance, your care team may discuss options like chemotherapy, radiation therapy, or surgery. When these are palliative, they are not intended to directly treat the lymphoma, but are instead offered for symptom management and dealing with side effects.
Some palliative care costs are covered by health insurance, like Medicare, while others are not. Services may be provided in several settings, such as your home, an outpatient clinic or cancer care facility, an inpatient hospital, a long-term care facility, or your oncology office. If you’re a veteran, you may have access to free or low-cost palliative care through the Department of Veterans Affairs. Talk to your oncologist and health insurance carrier to learn more about your options.
Palliative care teams are made of palliative care specialists who work together to address your concerns and help make sure that your lymphoma treatment plan is suited to your goals. You may meet with various specialists, such as social workers, nurses, registered dietitians, physical therapists, psychiatrists, and massage therapists.
Many times, palliative care for lymphoma focuses on helping you manage the side effects of chemotherapy or other lymphoma symptoms. These can include fatigue, discomfort, and significant nausea and vomiting. The palliative care team will help you discover which treatments address these side effects so you can continue to live well with lymphoma.
Palliative care can also help to improve your strength and energy levels so you can keep up with the demands of daily life. In some studies, palliative care has been shown to extend the life span of those living with a serious illness, as compared to those who did not receive palliative care services. Whether you’ve just received a cancer diagnosis or have already undergone extensive treatments, ask your oncologist for more information about palliative care services to improve your health, well-being, and quality of life.
People with lymphoma can seek palliative care to help prevent infections, get intravenous antibodies, receive transfusions for low blood counts, and more. If you have lymphoma in your bones or swollen lymph nodes that cause pain and disrupt your sleep, a sleep specialist could work with you and your oncologist to discuss pain medications, your sleep environment, or other medications that may help with sleep.
Other professionals can also be part of your palliative care team. For example, a dietitian could help you develop strategies to prevent loss of appetite, such as eating smaller meals or incorporating high-calorie snacks and supplements into your diet.
As part of your palliative care program, a social worker can help you manage the various aspects of living with lymphoma — including finding transportation to your appointments, paying for medical care, applying for disability or medical leave, finding child care assistance, and communicating with friends and family about your condition.
A lymphoma diagnosis doesn’t just affect the individual. Often, loved ones and caregivers need support and resources as well. In addition to offering emotional support, a palliative care consultation can provide family members with practical advice about how to manage day-to-day responsibilities and help you deal with symptoms.
Filling out complicated medical forms, dealing with insurance companies, and finding housing and transportation are all topics of conversation families can have 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.
Research has shown that people with cancer experience mood disorders like anxiety and depression at a higher rate than the general population. Mental and emotional health issues are a common response to chronic illnesses like cancer and may make individuals feel isolated and fatigued. Trained mental health care providers can be an essential part of a health care team to provide interventions and support during any stage of life with lymphoma.
Palliative care providers can also help your loved ones. It can be stressful caring for someone with lymphoma, 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 lymphoma 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.
If you or a loved one is living with lymphoma, it can be helpful to know that you’re not alone. On MyLymphomaTeam, more than 11,000 members ask questions, share their stories, and encourage others who live with lymphoma.
Have you had experience with palliative care for lymphoma? What palliative care services did you receive and benefit from? Share your story with other people with lymphoma through the comments below or by posting on MyLymphomaTeam.