Distress, Fatigue, and Sexuality

Cancer patients may suffer from cancer-related or treatment-related quality of life issues that interfere with their usual functioning. Learn about the causes of fatigue, distress, and sexual dysfunction and how to cope with these problems.

Fatigue in Patients with Multiple Myeloma

In healthy people, fatigue is understood as exhaustion or tiredness that interferes to some extent with everyday activities. It usually occurs after strenuous or prolonged exertion of some kind and is temporary. Rest and refraining from strenuous activity can help restore energy and make a healthy person feel better.

Fatigue that is related to cancer and its treatments is different and more severe than normal fatigue and tends to last longer. Simply resting does not alleviate this type of fatigue, which has been defined by the National Comprehensive Cancer Network (NCCN) as “a distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning.”

Cancer-related fatigue (CRF) may be associated with difficulty concentrating, dizziness, or a loss of interest in what is going on around you. Asthenia, a condition in which the body lacks or has lost strength either as a whole or in any of its parts, often accompanies or is a component of CRF.

In patients with myeloma, fatigue and asthenia can be the result of many individual or collective causes, including the myeloma itself and/or treatments for myeloma, as well as other medical problems and/or their treatments.

Report your fatigue to your doctor

Do not think that your fatigue or weakness is not important enough to discuss with your doctor. Fatigue or weakness may be a consequence of your diagnosis or treatment, but this doesn’t mean that it cannot be prevented or managed. Be thorough in reporting your experience to your doctor, and include the following descriptors if applicable:

• All of your other conditions or illnesses
• All prescription and over-the-counter drugs you are taking
• Changes in appetite, diet, and/or weight
• Changes in activity level, daily routine, and/or sleep pattern
• Circumstances or time of day or when your fatigue is most noticeable,
• Presence and location of physical pain,
• Emotional stress, anxiety, or depression,
• Lack of energy and motivation
• Decreased libido
• Swelling in the legs or ankles
• Shortness of breath
• Rapid heartbeat
• Headache
• Dizziness
• Chills

Your doctor will grade and classify your fatigue

Keep track of your fatigue and note how it impairs your quality of life. Your doctor needs your input in order to assess the severity of your fatigue and the extent to which it prevents you from performing the normal activities of daily living.

Your fatigue will be rated on a scale from 0 (no fatigue) to 10 (worst fatigue imaginable). In addition, your fatigue will be classified as 

• mild (0 to 3), 
• moderate (4 to 6), 
• or severe (7 to 10).

Myeloma-Related Fatigue

The most common causes of fatigue in myeloma patients are myeloma-induced anemia, high levels of cytokines, and persistent pain. Each of these causes can result in weight loss, decreased appetite, weakness, and fatigue. When more than one issue is present at the same time, fatigue can be severe.

Anemia

Anemia is very common in myeloma patients and is often the first symptom of the disease. At least 60%–70% of newly diagnosed myeloma patients have anemia at the time of diagnosis. Learn more about anemia.

High levels of cytokines

Cytokines are proteins that circulate in the bloodstream. High cytokine levels are known to be a source of cancer-related fatigue. Cytokines such as interleukins, interferon, and tumor necrosis factor (TNF) are molecules that send signals within the immune system.

Cytokines are released by T cells (T lymphocytes) in response to infection or inflammation. Cytokines can stimulate the growth of cancer cells, hinder apoptosis (death) of cancer cells, and aid cancer cells in spreading to other areas of the body. The effect of cytokine release is similar to the fatigue you feel when fighting a viral illness such as the flu, but it lasts longer.

Cytokine release syndrome (CRS) is an uncontrolled immune reaction that is potentially fatal, in which cytokines become highly elevated and trigger an overwhelming immune system response. A cytokine “storm” can seriously damage body tissues and organs. Effective anti-myeloma treatment lowers the level of cytokines in the bone marrow environment where myeloma grows. Learn more about cytokine release storm.

Pain

Many myeloma patients suffer from painful bone disease or from pain related to peripheral neuropathy (PN), a serious condition that can affect nerves in the hands, feet, lower legs, and/or arms. Patients may experience PN from the effects of the myeloma itself and/or from treatments for myeloma. Learn more about neuropathy. 

Chronic, severe pain, whether from myeloma bone disease or from PN, causes fatigue. Some of the most effective pain relievers can also cause drowsiness, loss of appetite, nausea, weight loss, and headache, all adding to fatigue. Learn more about myeloma-related pain. 

Myeloma-Related Treatment Fatigue

According to the National Cancer Institute (NCI), fatigue is the most common side effect of cancer treatment. A side effect is an unwanted or unexpected effect caused by a treatment approach. Side effects are also called adverse reactions or adverse events (AE).

Anemia

Treatments for myeloma can reduce all the blood cell counts and thus can cause anemia. If your treatment is causing anemia while your myeloma is improving, your doctor may prescribe an erythropoiesis-stimulating agent (ESA) to stimulate the production of red blood cells. ESAs are used only when there is also a chemotherapy agent in use.

ESAs carry their own side effects and risks. They should be used with caution in light of their association with increased tumor growth and reduced survival in some patients with cancer.

Neutropenia

Neutropenia is a reduced level of neutrophils, a type of white blood cell necessary to combat bacterial infection. Having too few neutrophils can lead to infection. If your myeloma therapy is causing neutropenia and you develop an infection, treatment with antibiotics and antivirals or a colony- stimulating factor (CSF), which can help to treat the problem underlying the infection and fatigue and will help prevent it from occurring again.

Fever is the most common sign of neutropenia. If you have a fever, you must get immediate medical attention.

Chemotherapy

You may experience fatigue because therapy can kill healthy cells along with cancer cells, so the body expends extra energy to repair the healthy cells. If too many white blood cells (WBC) are killed during therapy, you may get an infection, contributing further to fatigue. If too many red cells are killed, anemia results. Side effects such as nausea and vomiting, insomnia, muscle wasting, and changes in mood may also cause fatigue and weakness. These side effects are common when patients undergo high-dose chemotherapy (usually melphalan) with stem cell rescue.

Newer myeloma therapies

For reasons both known and unknown, fatigue is among the most commonly reported side effects of novel therapies for myeloma. These therapies can impair the production of new blood cells, leading to anemia and infection. Another factor is increased levels of cytokines. Fatigue may improve over time with duration of some treatment as the myeloma disease burden decreases. However, fatigue may also increase over time with other treatments. Let your doctor know of any side effect you are experiencing.

Steroids

Steroids are a type of hormone. Steroidal hormones are produced by the body. Synthetic analogues (equivalents) of some steroids can be manufactured in a laboratory. Dexamethasone, prednisone, and methylprednisolone are synthetic steroids that have multiple effects and are used for many conditions, including myeloma. Patients taking doses of steroids that are sufficient to treat myeloma may experience an initial burst of energy and sleeplessness followed by a “crash” into fatigue and weakness. To learn about dexamethasone and its side effects, read the IMF’s publication Understanding Dexamethasone in the Treatment of Myeloma.

Radiation therapy

Radiation therapy with X-rays, gamma rays, or electrons aims to kill cancer cells. Radiation can be delivered from outside the body or from radioactive materials implanted directly into a tumor, an abnormal mass of tissue that results from excessive cell division.

Radiation therapy damages both cancer cells and healthy cells, requiring extra energy to repair cellular damage. Radiation therapy is known to cause fatigue, which usually lasts 3 to 4 weeks after the treatment ends, but may last for months and/or become worse over time.

Radiation therapy in the upper chest or neck area may affect the thyroid gland, causing hypothyroidism (low levels of thyroid hormone) that slows down metabolism so that the body does not burn calories from food fast enough to provide adequate energy.

Medications for Other Medical Conditions

If you are being treated for other conditions while also being treated for myeloma, provide to your doctor and pharmacist a complete list of all the prescription medications and over-the-counter products that you are taking. Ask them about possible interactions and side effects, and get their guidance about setting a medication schedule that is best for you. Learn about drugs that may contribute to your fatigue in the IMF publication Understanding Fatigue.

Anxiety, Stress, and Depression

A cancer diagnosis is frequently accompanied by anxiety, stress, and depression. This is an understandable reaction when faced with a life-threatening illness. Patients are anxious and depressed about having cancer and the unknown course ahead, about its financial impact, and about meeting expectations at work and in private life. Insomnia often accompanies feelings of depression and fatigue, aggravating the cycle of anxiety, stress, and fatigue.

It’s often difficult to know whether depression causes fatigue or vice versa, but it’s important to try to identify the primary problem. Talk to your doctor and seek a support system to help you manage your mental health. For some patients, the need for emotional support can be met within the community of family and friends; others seek membership in a support group with fellow myeloma patients, and seek professional help from a licensed family therapist, social worker, psychologist, or psychiatrist. There is no stigma attached to seeking help or to taking a medication for depression or anxiety that will help you feel and function better.

Poor Nutrition

Fatigue can be the result of not eating or not absorbing enough calories, vitamins, minerals, and other nutrients. There are many reasons myeloma patients and cancer patients in general do not receive enough nutrition. Even when patients eat the same amount they did before diagnosis, they may lose weight because the body may not be able to absorb and use all available nutrients. Additionally, a growing tumor, an infection, a fever, and shortness of breath can all cause an increase in the amount of energy the body needs each day. Often, patients are dealing with treatments that cause nausea, diarrhea, constipation, or anorexia (appetite loss), and with emotional stress that dampens appetite.

The National Cancer Institute’s Eating Hints: Before, during, and after Cancer Treatment is available to download for free. This publication includes the helpful suggestions to maintain your weight and meet your nutritional needs.

Dehydration can also drain your energy. Make sure that you are drinking enough liquids to restore what may be lost with vomiting or diarrhea. All myeloma patients, but especially those with kidney dysfunction, must drink plenty of water to flush out their kidneys and reduce the side effects of medications.

Reduced activity

Contrary to widely held opinion, resting and napping is not the best remedy for cancer-related fatigue. Inactivity deepens fatigue. Experts now recommend frequent light exercise to reduce fatigue and stress, build and maintain bone and muscle, and improve endurance. Walking just a short distance and trying to go a little further each day can help you gain strength. If bone pain makes it difficult to walk or do other exercises, swimming or treading water can be a non-stressful and very effective substitute. The resistance of the water helps to build muscle strength.

Sometimes practicing “mind over matter” can get you through a challenging day. At other times, doing something you enjoy can help you overcome the feelings of fatigue. To conserve energy, try alternating sedentary and more physically demanding activities and schedule activities at your times of peak energy.

Discuss all exercise plans with the doctor treating your myeloma and get clearance for anything you plan to do. Exercise should be tailored to your bone health and overall fitness.

Developing a Plan to Manage Your Fatigue 

Effective communication with your healthcare team is essential. If any changes have occurred that you think could be adding to your fatigue, discuss these with your doctors. Some factors that may not be obvious could be making your fatigue worse, and many are treatable. Your health care team can work with you and your care partner(s) to develop a plan for you.

Along with transfusions, medications, and dose and schedule adjustments that the doctor can help with, there are also a number of other things you can do to manage and cope with your fatigue, including the following:

• Exercise (walking, swimming, gentle yoga).
• Coping strategies (doing things you enjoy, seeing people you enjoy).
• Modification of activities (re-establishment of priorities, use of labor-saving devices, getting a good night’s sleep).
• Counseling.

If you are experiencing fatigue, your family members or other care partners can be great support. Feel free to talk with them about your fatigue and the impact it has on your life. Good communication is essential in your interactions with your medical team and with your support team.

Sexual Dysfunction

Anxiety, distress, fatigue, and some medications cause sexual dysfunction in both men and women.

In Men

Erectile dysfunction has been documented from use of:

• Steroids, Cytoxan® (cyclophosphamide), melphalan, thalidomide, Velcade® (bortezomib), and Revlimid® (lenalidomide).
• Steroid therapy may also reduce desire.
• Other conditions such as diabetes, prostate cancer, thyroid disorders, hypertension, kidney disease, cardiovascular disease, pain, depression, and disturbances in body image may reduce sexual function.

In Women

Women may experience loss of arousal, painful intercourse, loss of desire, and difficulties having an orgasm.

Sexual dysfunction may be caused by medications, hormonal therapy, ovarian failure, pain, body image changes, and changes in interpersonal relationships.

Managing Sexual Dysfunction

• Report your problem to your healthcare provider, who will address underlying concerns to see if they are affecting your functioning
• Seek therapy with your partner to familiarize yourselves with one another's sexual changes
• See a gynecologist, urologist, or endocrinologist to discuss medical treatments for sexual dysfunction that are safe for you to use.