The term “supportive care” includes many services, all designed to help you manage your diagnosis and treatment most effectively. The goal is to help you maintain the best quality of life possible, and it can begin as early as the day you receive your diagnosis. Along with helping you, it offers valuable assistance to your children, family members, caregivers and others close to you. Ask your doctor, nurse or another member of your health care team how to get started.
Supportive care addresses the physical, emotional, practical, spiritual, financial and family-related challenges associated with cancer. Many people begin by getting help to manage side effects and pain. Counseling about nutrition, fitness, mental health or spirituality; physical/occupational therapy; speech therapy; complementary medicine and other areas are also available.
You may receive these services from an advanced practice nurse, physical therapist, dietitian or palliative medicine specialist who has extra training in symptom management. These services may be offered at the hospital, cancer center or medical clinic and are often covered by individual insurance plans, Medicare and Medicaid. To learn more, you can talk with the hospital’s social worker, financial counselor or your health insurance representative.
Potentially Severe Side Effects
Side effects can range from bothersome to severe. Though serious side effects are rare, it is important to be aware that they can occur with certain types of treatment. Ask your doctor whether you are at risk from the therapies in your treatment plan, how to identify the symptoms and when to seek emergency care. Report symptoms immediately if they occur so they can be treated rapidly. Some potentially severe side effects include the following:
- Infection can occur as a result of a low white blood cell count (neutropenia) or other factors. Contact your doctor immediately – do not wait until the next day – if you have any of these symptoms: oral temperature over 100.4 °F, chills or sweating; body aches, chills and fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pus or drainage from an open cut or sore; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching. If you cannot reach your doctor, go to the emergency room.
- Immune-related adverse events (irAEs) may occur with certain immunotherapy drugs if the immune system becomes overstimulated by treatment and causes inflammation in one or more organs or systems in the body. Some irAEs can develop rapidly, becoming severe and even life-threatening without immediate medical attention.
- Cytokine release syndrome can occur with CAR T-cell therapies if immune cells affected by treatment rapidly release large amounts of cytokines into the bloodstream. Symptoms may include headache, fever, nausea, rash, low blood pressure, rapid heartbeat and difficulty breathing.
- Hepatic toxicity (liver damage) may occur with some drug therapies. Symptoms may include rash, fever, stomach pain, nausea and vomiting, jaundice (yellow color in the eyes and skin) and fatigue.
- Infusion-related reactions most frequently occur with treatment given intravenously (IV) through a vein in your arm, usually soon after exposure to the drug. Reactions are generally mild, such as itching, rash or fever. More serious symptoms such as shaking, chills, low blood pressure, dizziness, breathing difficulties or irregular heartbeat can be serious or even fatal without medical intervention.
- Tumor lysis syndrome (TLS) may occur after treatment of a fast-growing cancer, especially certain blood cancers. Symptoms may include vomiting, diarrhea, muscle cramps or twitches, neuropathy and decreased urination. TLS can potentially cause damage to the kidneys, heart, liver or other organs.
Common Side Effects and Solutions
Cancer and its treatments typically have side effects, but people respond differently even if they have the same diagnosis and type of treatment. Ask your doctor what you should expect and ways to relieve or minimize them (see Table 1).
|Anemia||Low energy, weakness, dizziness, light-headedness, shortness of breath, rapid heartbeat|
|Blood clots||Leg discomfort|
|Bone loss and pain||Weakened bone caused by the cancer or treatment|
|Chemo brain||Brain fog, confusion and/or memory problems|
|Constipation||Difficulty passing stools or less frequent bowel movements compared to your usual bowel habits|
|Diarrhea||Frequent loose or watery bowel movements that are commonly an inconvenience but can become serious if left untreated|
|Fatigue||Tiredness that is much stronger and harder to relieve than the fatigue a healthy person has|
|Fever||Raised body temperature that could signal an infection|
|Hair loss (alopecia)||Hair loss on the head, face and body|
|Hypercalcemia||Excessive thirst and/or urination, headaches, nausea/vomiting, severe constipation, confusion, depression or decreased appetite|
|Keratopathy||Changes to the surface of the eye that can lead to dry eyes, blurred vision, worsening vision, severe vision loss and corneal ulcer|
|Nausea and vomiting||The feeling of needing to throw up and/or throwing up|
|Neutropenia||Low white blood cell count that increases the risk of infection|
|Peripheral neuropathy||Numbness, pain, burning sensations and tingling, usually in the hands or feet at first|
|Respiratory problems||Shortness of breath (dyspnea) with or without coughing, upper respiratory infections.|
|Skin reactions||Rash, redness and irritation or dry, flaky or peeling skin that may itch|
|Thrombocytopenia||Low number of platelets in the blood, which can lead to bruising and bleeding|
One or more of the following medications may help alleviate some symptoms of myeloma or side effects from its treatment:
- Antiemetics (anti-nausea medicines)
- Antimicrobials (antibiotics, antivirals and antifungals)
- Blood thinners
- Bone-modifying agents
- Erythropoiesis-stimulating drugs for stimulating the bone marrow to produce more red blood cells
- White blood cell growth factors to help your body make more white blood cells
These procedures and therapies may also be used alone or in combination:
- Intravenous fluids for dehydration caused by vomiting, diarrhea or mild hypercalcemia.
- Intravenous immunoglobulin (IVIG), which is an infusion of antibodies, may be given to prevent or treat infections.
- Kyphoplasty and vertebroplasty are surgical procedures that may be used if weakened vertebrae collapse. They involve inserting bone cement into a fractured vertebra to help stabilize it and prevent it from moving.
- Occupational therapy (OT) if physical activity and/or daily routines need to be modified due to pain or other limitations.
- Physical therapy (PT) can help build and maintain muscle strength, improve balance and increase coordination.
- Plasmapheresis treats blood that has become too thick from an overabundance of M-proteins, slowing circulation and increasing the risk of blood clots.
- Transfusions inject blood, plasma or platelets intravenously (IV) and may be used for severe cases of anemia.
Support for All Parts of Life
Managing a chronic disease can include emotional side effects, such as anger, fear, anxiety, depression and loneliness. These feelings are normal and should be addressed. Taking care of your emotional well-being will help you cope better and manage physical side effects. Get immediate medical attention for thoughts of suicide or death.
Ensuring you have enough support in other areas, including the following, is important. Talk with your health care team. You do not have to go through this alone.
Social support is available in many forms. You may choose to speak with a therapist or attend an online, telephone or in-person group. Many advocacy programs offer one-on-one buddy programs that pair you with another person who has multiple myeloma, and their advice can be invaluable.
Spiritual guidance may be provided by a chaplain or spiritual care advisor at the hospital or from your religious community. Spiritual support is available to you even if you do not consider yourself a religious person.
Financial counseling may be accessible from a social worker or financial counselor. The stress and anxiety of paying for treatment and other related expenses can negatively affect your well-being. Understand the costs ahead, and make a plan to help you feel more in control.
Keep the lines of communication open with your health care team. Instead of waiting for your next appointment, contact them by phone or portal to let them know when a physical or emotional side effect or symptom begins so it can be treated or managed before it gets worse.
Also, be alert for late effects. They are side effects that can occur months or even years after treatment begins.
Palliative Care vs. Hospital Care
Supportive care services are also referred to as palliative care, and these services are often confused with hospice care. Palliative/supportive care can benefit anyone with a serious or life-threatening illness. It is available at any time, whereas hospice care is reserved for end of life.