Focusing Energy on Cancer-Related Fatigue

As a college student and windsurfer on the Olympic development team, the sudden abnormal exhaustion Michael Cramer experienced revealed that something was very wrong. At age 19 in July 2020, Cramer and his mom, Ashlee, decided it was necessary for him to visit the hospital, despite the ongoing COVID-19 pandemic.

The next month, he received a diagnosis of hepatosplenic T-cell lymphoma. This subtype of lymphoma (a blood cancer) is considered rare, aggressive and is more common in adolescents and young adults, according to a study published in Blood.

Cramer received three rounds of chemotherapy, radiation and a bone marrow transplant from a donor in October. However, in January 2021, he developed graft-versus-host-disease (GVHD),

which occurs when the donated stem cells (graft) identify the patients’ cells (host) as a threat and attacks the host’s tissue, as defined by the Cleveland Clinic.

Four years later, Cramer, now 23, is in remission and receives immunosuppressants to help treat his GVHD. Still, he experiences cancer-related fatigue, which he says is likely from a mix of his cancer treatment and GVHD.

“Now I still deal with chronic fatigue as one of my main [side effects],” says Cramer, of Miami. “I get energy in spurts and bouts, but I always have to rest whenever we go somewhere to speak at a [cancer advocacy] event.”

His quality of life, he says, has been heavily affected by cancer-related fatigue. At times, he’ll wake up feeling motivated to have a productive day but realizes he’s only able to accomplish a few tasks because of intense fatigue. Completing smaller tasks now makes him feel more exhausted than they used to, he explains. After exercising for an hour, Cramer finds himself having to rest for a while once completing his repetitions.

“I just need to rest a lot more than I used to and need to take more time to sit down,” he says. “I don’t like sitting down a lot. I like to be very active, so it’s been hard for me to accept this. I try to push through, but then I end up very exhausted. It’s an interesting balance: figuring out whether I’m doing enough or doing too much.”

To add to the challenge, Cramer notes that his energy spurts come at random times during the day, which he tries to take advantage of. When these energy spurts align with his availability, he tries to use that time to work out and if it’s during the evening hours, he takes walks on the beach with his mom.

Ashlee — who left her career to become his caregiver full time — helps when he feels overly fatigued. She also advocates for him to rest when necessary because “she knows me and my fatigue so well,” Cramer says.

Now when he has those spurts of energy, he spends time with friends, challenges himself with Lego projects and creates content on social media with his mom about his cancer experience.

Understanding Cancer-Related Fatigue

Cancer-related fatigue is a common side effect most survivors experience, especially because it can be caused by both the cancer and its treatment, according to guidelines from the National Comprehensive Cancer Network. This type of fatigue may last months to years after the end of treatment and “does not improve with normal amounts of rest or sleep and disrupts daily life,” the guidelines state.

“Cancer-related fatigue is a fatigue that is pervasive throughout the body. The best way to describe it is the fatigue someone feels when they have the flu,” adds Luke Peppone, associate professor in the Department of Surgery, Cancer Control and Cancer Center at the University of Rochester in New York. “It’s not due to a lack of rest — additional rest does not alleviate this fatigue. When people have pervasive fatigue, it could be mental fatigue or physical.”

The source of cancer-related fatigue can vary, Peppone says. Almost all types of cancer treatments lead to some degree of fatigue, but chemotherapy contributes the most. Survivors who received chemotherapy for their cancer have “at least a 90% chance or greater of experiencing cancer-related fatigue,” Peppone says. When treatment ends, most people’s fatigue is alleviated within six months. However, in about 30% of survivors, he emphasizes that the fatigue doesn’t go away within six months and may last one to two years following treatment.

“Now the studies are being followed up longer and longer,” he says. “We find that five years out of treatment, 30% still have fatigue and even up to 10 years out now, as we extend the studies.”

Similarly, immunotherapy (a type of cancer treatment that helps the immune system destroy cancer) may also be related to cancer-related fatigue because the immune system can react against different organs, so survivors are “going to see some level of fatigue,” Peppone explains. Even nonintravenous therapies (treatments not infused through a vein), such as radiation and surgery, may cause some fatigue, but mostly because of the recovery process following these treatments, he says.

How Interventions Can Improve Cancer-Related Fatigue

Although cancer-related fatigue can alter quality of life and the way daily tasks are

completed, there are still ways to mitigate this side effect. Several practices to help manage cancer-related fatigue were updated in the 2024 American Society of Clinical Oncology (ASCO)-Society for Integrative Oncology (SIO) guidelines, which Peppone helped review. Based on further research, some interventions for fatigue were shown not to work, while many others were confirmed to be helpful.

“One thing not recommended during a person’s cancer experience is wakefulness agents (stimulants to help with alertness) and psychostimulants. So, no drugs [of that type] are recommended at all,” Peppone says.

A significant intervention that has been shown to help with managing cancer-related fatigue is exercise or a type of physical activity.

“There’s been evidence from the American College of Sports Medicine that doing 150 minutes of physical activity per week helps,” says Dr. Erin Kelly, director of Cancer Rehabilitation at Thomas Jefferson University Hospital in Philadelphia.

“I say physical activity because a lot of people don’t find exercise as something they enjoy, but some of our daily activities are really a form of exercise.”

However, Kelly notes that it may take a 12-week period or longer before survivors with fatigue notice the results, recommending 30 minutes of aerobic exercise at least three times a week. She explains that a breathlessness scale from zero to 10 helps indicate how much physical activity a person does and overall fitness. Aerobic exercise, specifically, is a 5 or 6 on the breathlessness scale, meaning a person can likely still talk but cannot sing, she says. Kelly says examples of aerobic exercise include a brisk walk or jogging.

Incorporating everyday physical activity doesn’t stop at aerobic exercise, though. Kelly explains that adding resistance training is important, but this doesn’t always mean lifting heavy weights; the key is repetition until it’s difficult to complete the next set of exercises.

“Being physically active is the best thing you can do to both prevent fatigue from occurring in the first place or treat it once it has occurred,” says Dr. Jennifer A. Ligibel, of the Breast Oncology Center at the Dana-Farber Cancer Institute and associate professor at Harvard Medical School, both in Boston. “It’s important to start slow so that you don’t wear yourself out, especially if you’re already experiencing fatigue.”

Completing exercise while feeling cancer-related fatigue can be a large ask, so Kelly agrees it’s necessary to build up to it. Instead of starting at 30 minutes, three times a week, she suggests starting at least once a week and asking a friend to join to make it more fun while having accountability. And you don’t have to necessarily start with exercise. Opt for an enjoyable physical activity, such as gardening, yoga, tai chi or meditation.

‘The Fatigue Just Takes You Out’

When Diane Holland first experienced cancer-related fatigue, she had trouble determining whether she should build her stamina or rest. Now she goes on a walk and tries to push herself to do something physical daily. Like Cramer, Holland finds that her cancer-related fatigue varies each day.

Holland, 65, of Bensalem, Pennsylvania, has received four diagnoses for three cancer types since 2019. She first received a diagnosis of lung cancer in June 2019, for which she underwent surgery to remove the lower lobe of her left lung and was told she wouldn’t need further treatment. In December of that year, she was diagnosed with bladder cancer and underwent a procedure to remove the tumor. Following a routine mammogram, she received a diagnosis of breast cancer in 2021 and underwent a double mastectomy, chemotherapy, radiation and reconstructive surgery.

During the summer of 2023, she received her fourth diagnosis: a recurrence of her lung cancer. A full-time sales support employee at a multinational company, Holland says fatigue takes on a new meaning during treatment — mentally, physically and emotionally. Between appointments, working remotely and taking days off to recover from treatment, she has been able to balance her work life and fatigue. On the every other Tuesdays she receives chemotherapy, she takes the day off from work but is able to work the following two days after receiving steroids and antinausea medication. By Friday, she says the steroids wear off and she has to take another day off from work.

The level of fatigue Holland experiences from chemotherapy causes her to crash, which also affects the way she processes sound, she says.

“The fatigue just takes you out,” she explains. “It’s not just lying in bed, watching TV. I can’t really process the sounds. I just lay quietly, whether it’s in bed or on the sofa, just no sound.”

On posttreatment days when Holland’s fatigue is more manageable, she visits Kelly and a nutritionist at Jefferson hospital, where they discuss exercise and diet plans. Holland notes that trying several forms of integrative oncology, such as Reiki (a form of energy healing) and oncology massages, help her have some peace of mind. Her specialists have helped her manage fatigue, but Kelly has also helped change Holland’s mindset toward it.

“The most important thing that Dr. Kelly said to me is something that totally changed how I’m interacting with my fatigue,” Holland says. “She said, ‘You’re tired when you’re out and you’re tired when you’re home. Don’t let that stop you from going out to do the things you enjoy. Maybe just keep going out even though you feel tired and see if that brings you more energy.’

“It totally does. It was life-changing for me.”

Mitigating Cancer-Related Fatigue at Home

Energy conservation and using energy wisely are crucial, as Cramer and Holland both describe. Asking for help from loved ones is an effective way to help conserve energy, especially when there’s a task or event worth spending it on, Kelly emphasizes. Even getting help doing everyday tasks, such as laundry, may help.

“If people have cancer-related fatigue, energy conservation is something we talk about a lot,” Kelly says. “Try to conserve your energy to do the things you would like to do. Even if it’s someone else willing to help you do the laundry today because you’d rather go out and walk the dog. This can be taking that help and asking friends and family for favors for things that don’t give you joy and wouldn’t be adding to your physical fitness.”

Prioritizing how to spend each day by scheduling activities during energy spurts and delegating tasks to other people can help and is sometimes necessary, says Ligibel. Noticing trends in energy levels may also be helpful, particularly when completing tasks that require more energy, such as going grocery shopping. She notes that if a person feels more fatigued in the afternoon, then it may be best to structure their day around that.

Practicing mindfulness through cognitive behavioral therapy — another intervention listed in the ASCO-SIO guidelines — can be helpful, even online, Ligibel says.

“Seek out those opportunities for mindfulness because there’s data that it has been helpful,” she suggests. “Try to build that into your day because finding a quiet time and space for that — it’s not always so easy.”

Read the rest of the Heal Fall 2024 issue here.

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