TRIPLE NEGATIVE breast cancer survivor Jennifer was overweight and depressed when she learned about the Cancer Obesity/Overweight Insomnia Study, known as COIN. “I was sleeping all day. I didn’t want to do anything. I felt like my life was going nowhere,” says Jennifer. “The COIN study literally changed my life.” Medical oncologist, breast cancer expert and Fetting Fund researcher Jennifer Sheng, M.D., says weight gain after diagnosis is a serious matter and quite common. Over one-half of breast cancer patients struggle with excess weight, and this adversely impacts quality of life. Women who are already overweight when diagnosed may be most affected. Excess weight may even increase the risk of the cancer coming back by 40% to 50% and the risk of dying from their cancer by 50% to 60%. Insomnia further complicates matters. Janelle Coughlin, Ph.D., COIN study leader and Associate Professor of Psychiatry and Behavioral Sciences, says 20% to 70% of cancer patients are sleep deprived, and this alone has been linked to poor outcomes. Further, she says, research finds that sleep deficiency undermines weight loss efforts. “Targeting sleep may be a critical and neglected component of weight loss treatment,” says Coughlin.
With a pilot grant from Under Armour, which is dedicated to women's health and fitness, Coughlin, Sheng, sleep expert Michael Smith, Ph.D., Director of Behavioral Medicine and Psychiatry at Johns Hopkins Bayview Medical Center, and Breast Cancer Program Director Vered Stearns, M.D., embarked on a study to promote both healthy sleep and healthy weight in cancer survivors. Working together, they built upon the success of an earlier clinical study called POWER (see http://bit.ly/2ZPOWER for more information), a telephone and web-based remote weight loss coaching program, adding a sleep component.
Noting that patients often struggle to achieve weight loss on their own, the POWER and COIN studies used behavioral approaches to help patients with weight management. “Helping breast cancer survivors tackle weight management is a mission within our entire department,” says Sheng. In COIN, there was an added a focus on sleep disturbances and insomnia, and how they may impact weight and metabolism. “We are interested in seeing if we treat sleep conditions, can we get better outcomes with obesity treatments,” says Coughlin. Jennifer began the study six months after her mastectomy. Her surgeon told her she got all of the cancer, which was great news, but Jennifer says she still didn’t feel healthy.
She was overweight before her cancer diagnosis, but after the surgery, she gained more weight. Then she received an email about the COIN study, and things began to change for her.
The first part of the COIN study addresses insomnia. Sleep deprivation, Sheng says, results in changes in the hormones that suppress appetite and cause the body to expend less energy. Lack of sleep can cause people to consume more calories at night, Coughlin notes, adding that sleep-deprived people are also more likely to engage in impulsive eating and make higher calorie food choices. Jennifer had fallen into a pattern of napping frequently throughout the day and then had trouble sleeping at night. After they ruled out a medical cause of her sleeping issues, such as sleep apnea, Jennifer began working with a sleep coach and kept a sleep journal to help her log and track her sleep patterns. Her coach recommended behavioral changes, including specific sleep and wake times; discouraged napping; eliminated television, electronic devices and reading books in the bedroom; and cut or limited caffeine.
Each week, there was a new lesson and cognitive therapy to educate Jennifer about the importance of sleep and things that interfere with it to help her develop better sleep habits. It was difficult at first, Jennifer says, but in about a month, she describes feeling like her body rebooted. Now, she was able to get high-quality sleep at night, so she felt rested and had more energy during the day.
Patients often feel tired during the day because they do not get high quality sleep at night. They may be in bed, but they are tossing and turning and not getting the restorative sleep their bodies need, explains Coughlin. “When I was going through chemotherapy before my surgery, everything else went by the wayside. You eat when you can eat and sleep when you can sleep,” says Jennifer. Her emotional roller coaster began with no warning at age 47. Still reeling from her breast cancer diagnosis, Jennifer searched the internet to find information. Based on what she read, she remembers thinking, “I’ll be OK as long as it’s not triple negative.” When the results of her biopsy came back, her worst fear was confirmed— she had triple negative breast cancer. Her daughters rallied around her, and her parents traveled from Florida to be near and help her through her treatment.
When her cancer treatment was complete, Jennifer began to focus on survivorship. Janice was diagnosed at age 47 with lobular breast cancer. This type of breast cancer, although common, is challenging because it often does not present with a distinctive lump, which helps aid in earlier detection and treatment. Her four-year treatment and recovery was marked by complications that started when her pathology results revealed the cancer was more advanced than initially suspected, requiring she receive chemotherapy and radiation treatment in addition to surgery. She developed a serious post-mastectomy infection and had reactions to anesthesia and pain medications that became quite severe during her breast reconstruction surgery, resulting in a collapsed lung. She struggled with agonizing nerve pain throughout her recovery. “It took a tremendous toll on my body,” recalls Janice. “I wasn’t taking care of myself, and I wasn’t sleeping well.” Then her thyroid stopped working properly, and she began gaining weight. “I was so tired and miserable, and then I saw information about the COIN study,” she says. Janice’s sleep problems required more intervention. Medical exams and tests done as part of the screening for patients who wanted to begin the COIN study revealed she had obstructive sleep apnea and was waking up 130 times a night. “I knew I wasn’t sleeping well. I had no idea it was that bad,” Janice says. Successful treatment of her sleep apnea was required before she could begin the COIN study. Even with the apnea under control, however, Janice was still waking up at night when she entered the sleep portion of the COIN study. “I learned how to observe my body and feelings, and began to recognize how caffeine and how I was eating affected my sleep,” she says.
With treatment and guidance that helped both women with their individual challenges, Jennifer and Janice successfully completed the sleep portion of the study. With their insomnia and sleep disturbances abated, they moved on to the weight loss part of the study.
With the help of a weight loss coach, both women installed an app on their phones to track daily dietary selections, calories, exercise minutes and weekly weight. The COIN study used Under Armour’s My Fitness Pal, but Coughlin says there are other apps that work similarly. The weight loss program provided goals for daily calories and for exercise—180 minutes of aerobic activity per week, and health coaching helped with personalized weekly goals. Jennifer, for example, focused on limiting sugar and salt.
“Tracking is a tool we use to keep participants engaged in behavior change, which is essentially eating less, eating healthily and moving more,” says Coughlin. “It helps measure change and develop insight, motivation and awareness. “Janice says she noticed right away that she had been eating many more calories than she thought. In the past, she tried other popular diets that count points or require participants to eat specific foods. They never worked for her, she says, because they were too restrictive and required her to eat meals different from what she was cooking for the rest of her family.
“COIN was different,” Janice says. “I was finally ready to take care of myself. I was committed to this. I had to own it. I was the one in control, but my coach gave me the help and encouragement I needed to get that control.” Amanda Montanari has been a weight loss coach for the COIN study for over a year. “It’s been the best experience of my career,” she says. The program is individualized, helping participants learn what works best for them by tracking everything they eat, their exercise and their weight. The ultimate goal is 10% weight loss by sustaining healthy, lifestyle choices.“Some hit their goals sooner than others. By the end of the program, my hope is that they learn they can do this by themselves. We want them to connect with feeling better so they don’t want to lose that feeling,” says Montanari. “A diagnosis of cancer is no small thing. We want to help them put themselves back in the driver seat so that now, as a survivor, they have the skills to make lasting change.”
The six-month program — which Coughlin stresses is a lifestyle change, not a diet — begins with 12 weekly coaching sessions. It then moves to monthly sessions aimed at helping participants reduce foods that are not heart healthy and conversely add foods that are, and offers ways to introduce moderate to vigorous exercise in their daily routines. Coaches help participants navigate things like social gatherings, weekends, holidays and special occasions that might result in the temptation to overeat. Participants talk about things that are going well and talk about strategies for overcoming obstacles, such as stress eating. They are also given educational materials to support their weight loss journey. When tracking calories on the app, Montanari encourages participants to be honest with themselves. “I reassure them that I’m not going to judge them, but if they don’t log it, it’s difficult for us to find patterns that could be sabotaging their progress and making it hard for them to learn,” she says. Even if a participant feels like they had a bad week, there are always successes to point to, she says. Montanari is intrigued by the psychology of weight loss. As a cancer survivor herself, she was grateful for the opportunity to work with others in the same situation.
“It’s been amazing to work with these women. What they’ve gone through as cancer survivors and their commitment to COIN is inspiring,” says Montanari. Jennifer liked that the app kept her accountable. It helped her with portion control and to think more about what she was eating, and she began to make healthier choices. When she had setbacks, her coach was not judgmental. Instead, her coach helped her get back on track and find ways to cope with stress or life events that can sabotage healthy eating.
Jennifer is amazed at how far she’s come. She reflects on a photo taken when she visited her daughter at college for parents’ weekend. “It was horrible. I could hardly walk. Now, my daughter and I are walking 5Ks together,” she says. She set running a half-marathon next year as one of her goals. Jennifer stresses: “It’s not about getting skinny. It’s about getting healthy.” Janice has similar thoughts, recalling a time when she dreaded exercising and couldn’t walk up a hill without stopping to rest. “I pushed to get through 20 minutes, and now I love my hour of walking,” she says. “My coach helped me make myself a priority. Without that, there is always an excuse.”
During their weight loss journeys, both women faced several challenges. COVID-19 hit, and gyms closed, so Jennifer ordered weights and other gear for home-based workouts. Then her father passed away. “I was trying to do this, but I felt like everything was coming down on me,” says Jennifer. Janice had similar experiences, facing COVID-19 and a death and serious illness in her family. “I think I would have been on a track to become heavier, if I had not been in the COIN program during COVID-19 and these life changes,” says Janice. “When I had a bad time or week, my coach was encouraging. It was important to have someone to talk to help guide me and navigate through these things. ”
Although Janice and Jennifer are at different places in the COIN study and have different weight loss goals, they are both seeing success. Janice is still in the study. “With everything going on, I am down 22 pounds and still on track,” she says. “I was in a bad place. The study allows me to work on me and move forward. I feel blessed to be a survivor, but I wasn’t living like one. COIN has helped me so much, and I’m proud of what I’ve accomplished.” Jennifer completed the study and says she feels better than she has in years. She lost 57 pounds and says she’s maintained her healthy lifestyle and continues to lose weight. “I have the tools now, so I’ll be OK,” Jennifer says. “There is no way I’d be where I am without the COIN program. I’m so thankful.”