The Truth About CLL
One specialist debunks the most common myths about chronic lymphocytic leukemia and its treatment.
BY Beth Fand Incollingo
PUBLISHED December 16, 2018
HERBAL SUPPLEMENTS SUCH AS green tea, turmeric and mistletoe extracts can help patients with chronic lymphocytic leukemia (CLL) fight their disease — right?
Wrong, says Anthony Mato, M.D., director of the CLL program at Memorial Sloan Kettering Cancer Center in New York City.
A few years ago, Mato says, some studies suggested that these extracts had mild activity against CLL. Based on those early signs of evidence, he says, many patients began using the supplements, hoping to affect the biology of their disease. “But there’s a fair amount of toxicity and real side effects, such as GI (gastrointestinal) and liver symptoms, with these extracts, and it’s unlikely, anyway, that patients can ingest enough to affect their disease,” he says. “Furthermore, since the supplements are not FDA (Food and Drug Administration) regulated, we don’t know how pure they are or what people are taking.”
In response, Mato and five colleagues published an article reviewing the evidence about green tea and turmeric extracts “as a public safety message to practitioners,” he says. Although some findings indicate that the supplements offer a minimal benefit, most of the evidence makes a case against their use, according to Mato. “I’m in favor of exploring complementary medicine,” he says, “but interventions need to have rigorous evidence to support them, and people need to know what the risk factors are.”
The value of supplements is just one of the myths about CLL that patients often believe, Mato says. Here, he discusses the most common misconceptions he encounters in the clinic.
MYTH 1: CLL IS THE “GOOD” LEUKEMIA
“People say they’ve been told that CLL is a good leukemia to have, and this does patients a disservice,” Mato says. “One-third are never treated (because their disease is slowmoving and nonaggressive), but that doesn’t mean there aren’t medical issues that need to be addressed. Patients face a higher chance of infection … and of other malignancies because their immune systems may be dysregulated, which places them at risk of significant conditions that are related to CLL.”
MYTH 2: CLL MUST BE TREATED ASAP
“Most patients who hear they have leukemia think they need treatment immediately,” Mato says, “but more than half of patients with CLL are ‘watch and wait’ from the get-go, and one-third are never treated. You must have a specialist involved, because it’s easy to say, ‘Let’s treat everybody who comes in,’ but part of the art of managing CLL is knowing who to treat and who not to treat, so they’re not exposed to the risks of therapy.”
MYTH 3: TRANSPLANT/CHEMOTHERAPY ARE NEEDED
Since 2014, the FDA has approved four targeted therapies that inhibit the activity of specific proteins that drive this cancer, Mato says. “The number of patients who require the aggressive technology of stem cell transplant or who get traditional chemotherapy has decreased since these really sensational therapies were approved, and that’s a huge advance for patients,” he says. “Now most patients get targeted drugs, largely pills,” which produce fewer severe side effects than transplant or chemotherapy. The side effects associated with these newer drugs include diarrhea, nausea, constipation, fatigue, shortness of breath, rash and low blood counts.“ Patients who take these oral drugs “spend a very limited time at the cancer center; they mostly get prescriptions to be taken at home with routine follow-ups to make sure (they’re) still working well,” he adds.
MYTH 4: TREATMENT LEADS TO CURE
“This is a chronic leukemia, and most therapies we have — chemotherapies, immunotherapy, combinations of those and now targeted drugs — are aimed at long-term control of the disease and inducing deep remissions,” Mato says. “Outside of a very small proportion of patients who have a deep remission from chemotherapy or stem cell transplant, our goal is to improve quality of life. Control of the disease allows patients to tolerate multiple sequential therapies to prolong life. The risks associated with aggressive therapies may not be worth it when we have well-tolerated medications that can help patients live a normal quality and length of life.”
MYTH 5: PATIENTS MUST STEER CLEAR OF GERMS
“Most of the time, when patients are immunocompromised, their infections are from bacteria or organisms already in them,” Mato explains. “We all have bacteria in our gut, and those can cause infection. We’ve had viral exposures, like shingles, and (although they are dormant) they can come out later if our immune system is weakened.
“When it comes to picking up bacteria from others, we tell patients to be vigilant: Avoid people who are actively sick, if possible, and practice good hand-washing,” Mato says. “But outside (of) extreme circumstances, we don’t tell them to isolate themselves. We want them to continue to be part of their normal life. Isolating people from their friends and family is not one of the goals of the therapies we provide.”
This article is part of the Bringing the CLL Community Together program. Funding is provided by an unrestricted educational grant from Pharmacyclics, an AbbVie Company, and Janssen Biotech, Inc.