Network-Spring 2012

The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center

Spring ’12

network

Questioning supplements: Is your daily

multivitamin or dietary supplement necessary?

They come bearing pills.

Bottles and bottles of pills.

Richard Lee, M.D., assistant professor in the Department of General Oncology and medical director of the Integrative Medicine Center at MD Anderson, says that about half of his consults involve patients asking about a variety of supplements. They want to know whether it’s OK to take them to boost their health and help them fight cancer.

The answer is often no.

Americans spend billions of dollars on them every year, but the industry is largely unregulated.

Is it time to start questioning our multivitamin and supplement use? An increasing chorus of medical advice says yes.

• amino acids, and • substances such as • enzymes, • organ tissues, • glandulars, and • metabolites.

Simply put, Lee wants patients to think of supplements as medicines. Potent medicines.

“They’re largely unregulated, they may have adverse side effects, and they may interact negatively with other medications the patient needs to fight cancer,” he says.

He’s not against natural products, noting that they’re a common source of chemotherapeutic agents like vinblastine, which comes from periwinkle, and paclitaxel, derived from the bark of the Pacific yew tree.

What are supplements?

Another physician raises a question

Lee defines them as products taken by mouth that contain a “dietary ingredient” intended to supplement the diet. Pretty vague, eh?

These ingredients include: • vitamins, • minerals, • herbs or other botanicals,

Holly Holmes, M.D., assistant professor in the Department of General Internal Medicine, is another practitioner alarmed by the overuse of dietary supplements. A geriatrician and former pharmacist, Holmes says her elderly patients are often on a dozen or more medications. continued on page 2

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Questioning supplements continued from page 1

Holly Holmes, M.D.

Richard Lee, M.D..

When they ask her to help them streamline their meds, she often suggests eliminating the multivitamin. Patients are sometimes surprised — and resistant.

Both Holmes and Lee say supplements, including vitamins and minerals, can have their place — if the patient is deficient in that vitamin or mineral.

“True vitamin or mineral deficiency is very uncommon,” Holmes says. “We just want to test some vitamins before recommending supplements, such as vitamin D or vitamin B12.”

Another area of concern is the unregulated nature of these supplements. Many assume that the U.S. Food and Drug Administration (FDA) regulates them for safety, but that’s not the case.

The passing of the Dietary Supplement Health and Education Act of 1994 put control back into the hands of the manufacturers. The FDA regulates supplements as a category of foods, not as drugs, and manufacturers are not required to get pre-approval from the FDA before they enter the market.

The evidence isn’t there In consultations with patients, Lee cites a host of respected research studies that cast doubt on the claims of supplement manufacturers. For example, there’s no definitive evidence that supplementation with any vitamin or mineral helps prevent cancer.

Instead, some vitamins may actually increase the risk for certain cancers. And some supplements may cause dangerous side effects.

There are things they can do to stay healthy, Lee assures his patients.

Eating a balanced and nutritious diet is a great start. For a guaranteed natural dose of vitamins, they should consume plenty of fresh fruits and vegetables.

And he advises them to increase their activity levels.

Diet supplements don’t live up to the hype, but frequent moderate exercise — even broken into smaller increments — is a sure thing.

Lee remembers a patient who said he’d been taking supplements for years, and protested when Lee advised him to stop. Lee examined one of the bottles and saw that the product had expired five years earlier.

“If it has an expiration date, it’s not that natural,” he told the patient.

Most patients who come to the Integrative Medicine Center for a consultation usually end up taking his advice about eliminating supplements.

“I can take an hour with them, going through the research,” he says. “It usually convinces them.”

And what about Holmes, whose geriatric patients are often reluctant to give up their multivitamins?

“If they don’t believe me, I send them over to Dr. Lee,” she laughs.

For links to more information on dietary supplements, go to Network online: www.mdanderson.org/network.

Five-step program to wean off supplements 1. Come clean. Tell your medical team about all medications you’re taking. Better yet, bring them to your appointment.

2. Find out if you need the supplements. A simple blood screening can check your levels of important nutrients.

3. If you are deficient, aim for 100% — and no more — of recommended vitamins and minerals.

4. Strive to get essential nutrients the old-fashioned way, by eating a balanced diet including several fruits and vegetables daily.

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5. Get up and move! Exercise is good for your emotional and physical health.

people profile Katrina Barlow: then and now

By Johnny Rigg

When diagnosed with breast cancer nine years ago, Katrina Barlow’s initial reaction was fear.

“I was afraid, but I had faith I could overcome it,” she says. “My time at MD Anderson was divine — a blessing — what’s a better word than amazing? They took care of me and continue to care for me.”

In December 2010, Barlow returned to MD Anderson where doctors found the cancer had spread to several lymph nodes in her neck.

In early January 2011, she began chemotherapy and radiation and underwent several surgeries. Her treatment continued until June.

“Like an army, the medical staff filed in and helped me beat cancer,” she says. “Now I get a Zolodex injection in my stomach once a month to keep my body from producing estrogen. I’m still cancer-free with no cancer cells in my blood.”

Since then, Barlow has volunteered with the American Cancer Society and has even begun her own organization.

Living and Fighting Fabulously Inc. is a non-profit group that helps women battling breast cancer by providing programs, services and community support.

A hairdresser and stylist, Barlow offers women in cancer treatment makeovers, hair replacement, medical expense support, healthy nutrition and exercise plans, along with a variety of other services.

“Losing your hair can be traumatizing. I’m blessed to be able to help these women find their individuality again,” she says.

Faith, family key to recovery After her original diagnosis in 2003, Barlow closed her hairdressing salon in Beaumont, Texas, and relocated her two sons, Julius and Malik, to Houston. Since her recovery, however, she’s once again a business owner.

Salon’s on the Lake in Pearland, Texas, has allowed her to begin recovering from the emotional, financial and mental distress caused by her fight with cancer.

“This salon is much larger so I work with an assistant. I work when I feel healthy. Doing hair helps me find peace. It’s like medicine,” Barlow says.

Her older son, Julius, served in the U.S. Navy and is now enrolled in college, and Malik, 17, enjoys basketball and will graduate from high school next year.

“I was a single mother living with cancer. I got most of my support from my faith and from my church family,” she says.

For years, she lived with intense pain in her hip. “It limited my movement,” she says. “But I wanted to stay away from taking medication after all the treatment I had been through.

“If you fear it, you can’t overcome it. My life has changed for the better.”

MD Anderson experts assisted Barlow by teaching her meditation to alleviate the pain.

“The doctors helped me with stress, anxiety, the possibility of dying. Otherwise I would have been completely lost. They helped me realize that things happen to make you stronger,” Barlow says. “Now I know all things are possible.”

A member of Anderson Network, Katrina Barlow was first profiled in the Summer 2005 issue of Network. Read that story on Network’s website at www.mdanderson. org/network, under the Issues tab.

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Doctor, Doctor Eye problems and cancer treatment Stella Kim, M.D.

MD Anderson is one of a few cancer centers with a strong and growing ophthalmology section. We talked to Stella Kim, M.D., associate professor in the Department of Head and Neck Surgery, about eye problems that may occur as the result of cancer treatment.

What are the most common vision problems for cancer patients?

Common ocular, or eye, problems in cancer patients include ocular surface diseases (such as dry eyes, eyelid disorders, excessive tearing and ocular inflammation), cataracts (due to steroid or radiation treatment), bleeding (in the front or the back of the eye, due to low blood count) and fluctuation in a patient’s refractive error (prescription changes in their glasses).

Common ocular problems for patients whose cancer involves the brain include double vision, visual field loss and optic nerve swelling. Patients on newer biologic or small molecule therapies for their cancers may also develop ocular problems, though these are relatively uncommon.

Do particular types of cancer and/or treatments affect patients’ vision more than others?

Any cancer that involves the brain or central nervous system could cause vision problems. All cancer treatments that decrease patients’ ability to fight infection have the potential for lowering the threshold for eye infections. All chemotherapy regimens that include steroids may also cause vision problems, such as cataracts.

Radiation to the eye area — to treat head and neck cancers, cancer of the eye socket or whole brain radiation for

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brain cancer — may have acute and late side effects to the eye and vision.

Radiation-induced ocular problems depend on the treatment dose. Head and neck cancer patients also often need eye protection with eyelid surgery, if their cancer surgery and radiation causes misalignment of the eyelids and eye socket.

Patients with lymphoma or leukemia undergoing allogeneic (from a donor) stem cell transplantation frequently develop ocular graft vs. host disease. This can lead to severe dry eye or ocular inflammation that may result in significant decreases in vision and quality of life.

Is there anything patients can do to protect their eyes?

Absolutely. Here are some useful tips: • Hydrate your eyes during any treatment with

preservative-free artificial tears that can be purchased over the counter.

• Use baby shampoo (pH-balanced for the eyes) to clean the eyelids and a warm compress at bedtime to decrease inflammation on the lids’ surface.

• Don’t wear contact lenses during treatment, as they can cause serious eye infections.

• Use UVA/UVB sunglasses to delay the progression of cataracts.

Also, patients should seek an eye evaluation immediately if vision symptoms are severe. They should report symptoms to their primary team, who can help arrange an ophthalmology evaluation, especially for patients in active treatment.

Patients may also contact MD Anderson’s Head and Neck Ophthalmology Clinic at 713-792-6523.

To learn more about eye problems and cancer, go to Network online: www.mdanderson.org/network.

research briefs Drug starves fat cells in obese monkeys, prognostic model for MDS Next up, first clinical trial for obese prostate cancer patients Obese rhesus monkeys treated with an experimental drug that starves fat cells by destroying their blood supply lost, on average, 11% of their body weight in four weeks.

Treatment also slimmed the monkeys’ waistlines, reduced their body mass index (BMI) and decreased body fat. All measurements were unchanged in untreated monkeys.

“Development of this compound for human use could provide a non-surgical way to actually reduce accumulated fat, in contrast to current weight-loss drugs that attempt to control appetite or prevent absorption of dietary fat,” says co-senior author Renata Pasqualini, Ph.D., professor in MD Anderson’s David H. Koch Center for Applied Research of Genitourinary Cancer.

Most drugs developed to treat obesity focus on suppressing appetite or increasing metabolism, but both approaches have been thwarted by toxic side effects.

The MD Anderson group designed a new drug, Adipotide™. It includes a homing component that binds to a protein on the surface of fat-supporting blood vessels and a synthetic peptide that triggers cell death. With their blood supply gone, fat cells die and metabolize.

Obesity is a major risk factor for developing cancer, and obese patients tend to do worse in surgery, with radiation and chemotherapy, says co-senior author Wadih Arap, M.D., Ph.D., professor in the Koch Center.

The researchers are preparing a clinical trial in which obese prostate cancer patients would receive daily injections of Adipotide™ for 28 days. “The question is: Will their prostate cancer be affected if we can reduce their body weight and the associated health risks?” Arap says.

Prognostic model for patients with cancer therapy-induced MDS A large-scale analysis of patients whose myelodysplastic syndrome (MDS) is related to earlier cancer treatment overturns the notion that all of them have a poor prognosis.

MDS is characterized by a deficiency in the number of blood cells caused by bone marrow that’s not functioning correctly.

“MDS patients whose disease springs from earlier radiation, chemotherapy or both treatments are usually

told they have a poor prognosis. But by analyzing survival risk factors in a large patient population, we’ve found these patients fall into good, intermediate and poor prognostic groups,” says study leader Guillermo Garcia-Manero, M.D., professor in the Department of Leukemia.

Understanding their differences will better guide treatment decisions for these patients, he says.

The research team analyzed 1,950 MD Anderson patients treated between 1998 and 2007. It found 438 had been treated for cancer before their MDS diagnosis. Of these, 279 patients who had received chemotherapy, radiation therapy or both were analyzed.

A first round of analysis identified at least 15 factors associated with overall survival when considered as isolated, single variables. Next, the researchers conducted a multi-variable analysis that narrowed factors, reducing those that affect overall survival to seven.

To learn more about MD Anderson research, visit www.mdanderson.org/newsroom.

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Patients turned advocates:

Staying involved to help others Getting through cancer treatment is like surviving a siege.

When it’s over, many patients resume their lives and don’t look back.

For others, though, the experience compels them to help those in the same situation.

So they keep a foot in the world of cancer treatment by helping new patients individually, by staying involved with support groups or by supporting research or advocacy efforts.

Here are brief profiles of three people who felt called to speak up for cancer patients.

From the personal to the political Val Marshall is the mother of a pediatric cancer patient, though pediatric hardly seems to apply to her tall, athletic son Addison, who will enroll at Texas A&M University this fall.

Since Addison was diagnosed with acute lymphocytic leukemia (ALL) nearly three years ago at the age of 15, Marshall has accompanied him to countless appointments and treatments.

A professional organizer, Marshall became involved with other parents while they passed time in waiting rooms. “They noticed my binder,” she says.

Marshall’s customized binder keeps track of Addison’s appointments, medications, treatment requirements and more.

Knowing how overwhelming this task can be for parents already under stress, Marshall offered to make binders for other parents.

Later, through her involvement with the childhood cancer support group Candlelighters, Marshall heard about and signed up for Advocacy Day in Washington, D.C. A former pharmaceutical rep, she knew the drill of visiting congressional offices, making her case and trying to make an impression.

But now she was lobbying for the “medical orphans,” as she calls them — the 13,500 children diagnosed with pediatric cancers each year in the United States. Because these are relatively few diagnoses, research funding is lacking, she says.

MD Anderson is the “last station of hope” for many families, she says. “There are so many kids who don’t make it.”

She has great compassion for the families of pediatric patients, as well as the patients themselves.

This compassion serves her well on the steering committee of Anderson Network, where she represents the parents of pediatric patients. She recalls that when a longtime friend who is a pediatric nurse saw her soon after Addison’s diagnosis, she hugged Marshall and said, “Addy will be fine, but you will never be the same.”

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Survivor emphasizes humanity of fellow patients From the moment he arrived at MD Anderson, Tom Touzel showed the tenacity he brings to advocacy for bladder cancer patients.

After receiving his diagnosis — and a poor prognosis — he spent many hours doing online research into bladder cancer.

He determined that Colin Dinney, M.D., was the physician he needed to see.

But when he arrived at MD Anderson, he was told that Dinney, professor and chair of the Department of Urology, was no longer taking new patients.

Touzel’s response was characteristically forthright. “I said, ‘This is a cancer center. I have a feeling he’s going to have an opening. I’ll wait,’” he recalls with a laugh.

And wait he did, all day and part of the next. Eventually, Dinney came out to speak to him. He said, “I understand you’re quite persistent.”

Touzel shrugged and said, “I guess so.”

Though neither could have predicted it, it was the beginning of a mutually beneficial partnership.

After his treatment ended in 2006, Dinney invited Touzel to become a patient advocate for a Specialized Programs of Research Excellence (SPORE) grant in bladder cancer.

Patient advocates are essential members of the research team on these multimillion-dollar federal grants, bringing the patient’s voice and perspective. Touzel, who judges national dog shows for a living, even established a second home in Houston to make it easier to be near MD Anderson for appointments and volunteering.

“I still don’t know nearly as much as I should,” he says. He also volunteers several days a week in the Genitourinary Center, speaking to patients who have questions about the effects of treatment.

Ask your doctor any question, he urges them. They’re obligated to answer it.

He’s even done training sessions with medical staff.

“Even if they’re researchers who’ll be in the lab, I want them to remember one thing,” he says. “We patients are grateful to them. We’re happy to be walking, talking, living. But remember to look us in the eyes, make us human. Because that’s what we are.”

champion

support group

‘Sometimes the caregiver needs the success story’ Hans Rueffert, chef and contestant on the first season of “The Next Food Network Star,” got involved with the San Francisco-based Gastric Cancer Fund (GCF) shortly after his diagnosis with the disease in 2005.

Rueffert’s wife, Amy, found the group online when she was doing research into his gastric cancer, and urged him to contact founder J.P. Gallagher to see if the group needed help. Because Rueffert was such a willing and passionate spokesperson, he was soon invited to join the board.

Research is a heavy focus of the GCF’s mission, Rueffert says. “We’re mapping the gastric cancer genome.”

The group also raises awareness and gives support to those with the disease.

Rueffert is also an active member of Anderson Network, which connects patients with survivors who’ve been through the same or a similar treatment. Through its Telephone Support Line, he’s counseled dozens of gastric cancer patients.

He does similar telephone counseling for the GCF. “Some calls are quick — they just want to get a sense of what to expect. Other callers have become longtime friends.

“We stay in touch; we check on each other,” he says.

Rueffert has enlisted Amy to help with telephone counseling, too.

Often it’s not the patient, but his or her partner who reaches out for support, he says. “Sometimes the caregiver needs the success story.”

Scan this QR code to watch a video of Claudine James and Pamela Lewis discussing how they help other breast cancer patients.

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The University of Texas MD Anderson Cancer Center Communications 600784/18050664 – Unit 700 P.O. Box 301439 Houston, TX 77230-1439

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network The Anderson Network is a program of Volunteer Services at MD Anderson Cancer Center.

Address changes should be sent to: Mary Brolley The University of Texas MD Anderson Cancer Center Communications Office – Unit 700 6900 Fannin St. Houston, TX 77030-3800 Phone: 713-792-0658 Fax: 713-563-9735 Email: mbrolley@mdanderson.org Articles and photos may be reprinted with permission.

Susan French, Executive Director, Volunteer Services Debbie Schultz, Assistant Director, Volunteer Services/ Anderson Network Sara McIntosh, Chair, Anderson Network Mary Brolley, Writer/Editor, Network Scott Merville, Johnny Rigg, Contributing Writers Gini Reed, Graphic Design © 2012 The University of Texas MD Anderson Cancer Center

Anderson Network’s Telephone Support Line: 25 years of connecting patients, survivors For a quarter-century, Anderson Network’s Telephone Support Line has connected cancer patients and their caregivers with others who’ve been there.

From a database of more than 1,300 survivors and caregivers, patients are matched by disease, mode of treatment and experience.

Created by MD Anderson survivors who saw the need for matching patients with survivors they can relate to, the Telephone Support Line has matched more than 25,000 patients. The line is open to patients and survivors who were treated anywhere, and they’ve made matches around the globe.

If you know a patient who might benefit from a match, or if you’d like to join, call Anderson Network at 713-792-2553 or 800-345-6324. We especially need survivors of epithelioid carcinoma to share hope and support with others.

Contact us at 800-345-6324.

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Please consider joining Anderson Network. Call us at 800-345-6324 or 713-792-2553 or visit www.mdanderson.org/andersonnetwork.