Jeff Sirlin could barely bring himself to eat. Everything tasted like metal. It smelled bad. It made him feel worse.
Chemotherapy was killing off the tumor in his colon, as well as his appetite. Already thin, Sirlin, 41, of Needham was quickly losing weight, endangering his strength and his recovery.
Forty-five percent of cancer patients lose weight without trying during treatment, a recent survey of 1,200 patients found. Like Sirlin, the majority suffer a loss of appetite and energy, changes in smell and taste, and sometimes side effects like constipation, nausea, or bloating. About a quarter of cancer patients — mainly those taking steroids to fight breast cancer — gain weight during treatment.
Such weight gain can lead to recurrence, research suggests, while weight loss can undermine recovery.
But there’s not much medical guidance to help cancer patients cope with either problem, or to know what’s best to eat during treatment. In the last 15 years, only one major study has addressed the dietary desires of cancer patients — and it was a position paper calling for more research that never happened, said Bruce Moskowitz, a primary care doctor in West Palm Beach, Fla.
To tackle the problem, Moskowitz connected officials at seven leading cancer centers, including the Dana-Farber/Brigham and Women’s Cancer Center, with food service companies and master chefs to form the Cancer Nutrition Consortium, which officially launched in Boston last month. The consortium has been underwritten by Delaware North Companies, a food service and hospitality firm run by Boston Bruins owner Jeremy Jacobs.
The consortium aims to help cancer patients make healthy choices that will support their treatment. The survey was the first part of that effort, along with a new website, www.cancernutrition
consortium.org, which includes recipes and a forum to ask questions of professional chefs and nutritionists.
“If we can help to nourish [patients] better, give them a little more fuel, a little more energy, we feel that they can handle their treatments better,” said Kathy
McManus, a consortium board member and director of the department of nutrition at Brigham and Women’s Hospital and nutrition services at Dana-Farber.
One thing that quickly became clear from the group’s research: Not all cancer patients have the same problems or like the same foods. The consortium hopes to address different ethnic, dietary and personal preferences, as well as the range of symptoms faced by patients with different cancers.
In a taste-tasting at TD Garden last month, chefs prepared recipes ranging from glazed shrimp — the crowd favorite — to a chocolate pudding made with avocado , which fell a little short of the less healthy kind. Macaroni and cheese was considered healthy enough to make the list for patients who need to gain weight, though at 500 calories per cup, healthy family members need to be careful not to overindulge.
Sirlin, now six weeks past his last chemo treatment, was thrilled with the food, knowing it met his own strict standards for avoiding added sugars, skipping most red meat, and eating organic whenever possible.
Sirlin determined his new diet with advice from his medical team at the Dana-Farber/Brigham and Women’s Cancer Center, and through online research. But there’s very little hard data about what’s best for cancer patients to eat.
Nutrition experts agree that, as with everyone else, the healthiest diet for someone fighting cancer is loaded with colorful fruit and vegetables and low on processed foods.
Luckily, according to the patient survey, most patients are already at least partially following that advice — either on purpose or by accident. The foods they crave most, 69 percent said, are fruits and vegetables.
More than half the patients surveyed said they are avoiding greasy or fried foods, either because of intolerance or because of medical advice. Nearly a quarter said they avoid sweets.
There are suggestions from early research that added sugar can contribute to cancer recurrence.
“We know that sugar feeds cancer cells,” said Dr. Colin Champ, a radiation oncologist at the University of Pittsburgh Medical Center, who is not involved with the consortium but has published papers on cancer nutrition. “Especially for breast cancer, having higher circulating blood sugar and insulin can fuel cancer cells. The higher the level, the higher the chance of breast cancer coming back or getting worse.”
Breast cancer patients who gain 13 or more pounds after diagnosis increase their risk of recurrence and death about 1½ times, he said.
For prostate cancer, research in animals suggests that a low-fat diet supplemented with fish oil might limit the cancer’s aggressiveness, said Dr. William Aronson, a urologist specializing in cancer care at the University of California, Los Angeles.
Aronson is about to launch a study of men who have elected “watchful waiting” rather than aggressive care to see if their cancer is slow-growing enough that it won’t require treatment at all. Half the men will follow a low-fat diet with fish oil, and half will follow a more typical eating pattern, said Aronson, who wants to see whether the diet will slow the pace of more cancers. There’s enough early research to warrant diet trials involving extra tomatoes, broccoli, and green tea, too, he says.
Champ said he recommends that all his cancer patients opt for organic foods whenever financially feasible and convenient. It’s probably best to avoid pesticides, he and others said, though there’s little hard data on whether it helps.
Champ said he sees a cancer diagnosis as an opportunity for patients to improve their diets and exercise more. “There’s no better time to start implementing some of these changes,” he said, “than when a patient walks in and says ‘What can I do to make sure to cure it?’ ”
On the flip side, when cancer patients are losing weight, they need to find food that makes them feel good, said Boston nutritionist Stacey Bell, a consortium board member.
Any patient who loses more than 3-4 pounds in a week — regardless of their starting weight — should talk to their doctor or nutritionist to get help finding food they find palatable, Bell said. Weight loss is a bad idea even for patients carrying extra pounds, because they will lose crucial muscle as much as unnecessary fat, she said.
Sirlin, always slim and athletic, slowed his own weight loss during a 2010 round of chemo and again during a recurrence earlier this year with homemade shakes, smoothies, and soups — plus watermelon to soothe his dry mouth. Now, he said, he’s slowing regaining the 15-20 pounds he lost, plus his strength, with food similar to what the consortium prepared.
But it’s also important for cancer patients to give themselves a break if they don’t always choose the healthiest options, said Dr. Julie Silver, an associate professor and cancer rehabilitation specialist at Harvard Medical School, who is not involved with the consortium.
“Have a good healthy diet so you don’t crave foods that aren’t so healthy, and don’t beat yourself up if you slip up,” said Silver, a cancer survivor herself. “The stress associated with people worrying constantly about their diet is really hard on them.”
Despite his own commitment to eating well, Sirlin said it’s still tough for him to stick to a diet that will make his body as inhospitable to cancer as possible.
His 5-year-old son goes to birthday parties seemingly every weekend, said Sirlin, who forces himself to leave the room when it is time to eat cake.
“That’s a challenge, but I realize that [fighting cancer] is a marathon,” he said. “I need to think of my family and myself long-term.”