Legislative Watch [web exclusive]
Senate Committee Approval Advances the Conquer Childhood Cancer Act

The Conquer Childhood Cancer Act, a bill that earmarks $150 million over five years for research into childhood cancers, passed its first hurdle on November 14 when a Senate committee approved it unanimously. The bill, sponsored by Senator Jack Reed (D-Rhode Island), has bi-partisan support. The next step will be to bring the legislation before the Senate for a vote.

Representative Deborah Pryce (R-Ohio), whose daughter died at age 9 of neuroblastoma, a rare brain cancer, introduced the companion bill in the House in early 2007. The bill has not yet made it out of committee.

The Conquer Childhood Cancer Act has been championed by several organizations, including CureSearch, a collaboration between the National Childhood Cancer Foundation and the Children’s Oncology Group. The legislation will expand biomedical research programs through the National Cancer Institute, establish a fellowship program to encourage researchers to focus on pediatric cancers, provide educational support for patients and their families, and set up a population-based national database to evaluate the incidence trends of childhood cancers and to enable genetic research to determine better prevention and treatment strategies.

The legislation comes at a time when research funding for childhood cancers has steadily decreased over the past five years, though it remains the top cause of death for children under 15.

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The Place to Be
Colorectal Cancer Coalition’s Call-on Congress

The Colorectal Cancer Coalition will be hosting its second annual Call-on Congress event in Washington, D.C., on March 9-12, 2008. The event will bring colorectal cancer survivors together to learn advocacy skills and meet with members of Congress. Find details at www.fightcolorectalcancer.org or call 703-548-1225. Registration is limited.

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People Report
Everybody Loves Peter

The International Myeloma Foundation (www.myeloma.org) held a fundraiser, “Celebrating Peter Boyle: An Evening of Comedy with Family and Friends,” in November honoring the late Everybody Loves Raymond actor, who suffered from multiple myeloma and heart disease. Boyle died late last year at age 71.

Over $650,000 was raised to benefit IMF’s Peter Boyle Memorial Fund. Boyle received seven Emmy nominations during his 10 years playing Ray Romano’s father on Raymond. Boyle was also well-known for his role in Mel Brook’s film Young Frankenstein.

Left to right: Keith Black, MD, Pauletta Washintgton, Forest Whitaker, and his wife, Keisha

Following his Oscar award-winning performance in The Last King of Scotland, Forest Whitaker is turning his focus and support to the award-winning performance of someone else—Keith Black, MD, director of the Maxine Dunitz Neurosurgical Institute at Cedars-Sinai Medical Center in Los Angeles.

Whitaker, whose grandmother was diagnosed with brain cancer in the late 1990s, credits Dr. Black with extending his grandmother’s survival by a decade. Whitaker has been instrumental in raising funds to support Dr. Black’s brain cancer research. Dr. Black presided over the recent opening of the Johnnie Cochran, Jr. Brain Tumor Center, which was launched with more than $5 million in donations from prominent backers, including Whitaker and his wife, Keisha, and Denzel and Pauletta Washington.

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Prevention
More women choosing double mastectomy

After examining six years of data, researchers at the University of Minnesota found the number of women opting for double mastectomies in the United States has more than doubled, according to research published in the Nov. 20 issue of the Journal of Clinical Oncology.

Investigators looked at retrospective data from 1998 to 2003 of more than 150,000 women diagnosed with stage 1, 2, or 3 cancer in one breast. Most women had breast-conserving surgery (57.8 percent) or mastectomy of the affected breast (38.9 percent), but 4,969 women, or 3.3 percent, chose to have both the cancerous and healthy breast removed (contralateral prophylactic mastectomy, or CPM).

Among women undergoing mastectomy, the rate of CPM increased from 4.2 percent in 1998 to 11 percent in 2003. Characteristics seen in women having double mastectomies included young age, white race, and a previous cancer diagnosis.

Women diagnosed with cancer in one breast have an increased risk of cancer in the other breast, about 0.5 percent risk each year, which does not change over time. Adding in other factors, such as previous chest radiation and carrying the BRCA1 or BRCA2 gene mutation, may increase the risk even more, say the study’s authors.

Studies suggest that while CPM can reduce the risk of contralateral breast cancer, it may not improve survival. Authors of the study say better detection and chemoprevention therapies are alternative options to CPM. Data from the National Cancer Institute also show the rate of CPMs and breast-conserving therapies is increasing, with fewer women having unilateral mastectomies.

Researchers hope further studies will tease apart why women are choosing the more aggressive breast cancer surgery over unilateral mastectomy, but previous analyses found the most common reason was advice from physicians, in addition to fear of recurrence and body image. Increased use of breast MRI (magnetic resonance imaging) with non-specific or suspicious findings may also be leading to more CPMs.

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House Call
Q&A: Deep Vein Thrombosis

Q: Should I be worried about DVT?

Deep vein thrombosis (DVT) is a condition where blood clots form in veins, leading to pain, redness, and swelling. Blood clots can occur in any vein in the body, but DVT is more common in the legs and abdominal blood vessels found deep in the body.

Over the past several years, doctors have become more aware of how often DVT occurs in patients with cancer, either from the cancer itself, treatment, hospitalization, or surgery. Studies have shown cancer patients have double the risk of post-surgery DVT than patients without cancer.

Cancer patients are also four times more likely to develop blood clots than the general population, with an even higher risk for those receiving chemotherapy. Drugs associated with an elevated risk of DVT include multiple myeloma medicines, such as Revlimid (lenalidomide) and Thalomid (thalidomide); antiangiogenesis drugs, such as Avastin (bevacizumab), which treat cancer by preventing new blood vessel growth to tumors; and erythropoiesis-stimulating drugs, such as Epogen and Procrit (epoetin alfa) and Aranesp (darbepoetin alfa).

Aside from discomfort and possible disability caused by DVT, the condition can become life-threatening if a piece of the clot breaks off and travels to the lung—a pulmonary embolism (PE). When a PE occurs, it can bring on sudden shortness of breath, chest pain, and, sometimes, coughing up of blood. If the clot is large enough, it can block a major blood vessel in the lung and possibly cause death.

Several nationwide professional groups, including the American Society of Clinical Oncology and the National Comprehensive Cancer Network, have created awareness campaigns and guidelines to alert patients and physicians about DVT and the need to provide preventive treatment for patients at risk. Because of the new guidelines, there’s an increased likelihood that your doctor will prescribe a blood thinner to prevent DVT when appropriate, such as before and after surgery or with certain drugs.

Speak to your oncology health care team if you have questions or concerns about whether you should be receiving treatment to prevent DVT, or if you notice any of the signs or symptoms of DVT or PE. Prompt recognition and treatment can be lifesaving.

—Len Lichtenfeld, MD, is deputy chief medical officer of the American Cancer Society.

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Childhood Cancer
Blood Counts May Predict Survival

Survival rates for children and young adults with acute lymphocytic leukemia (ALL) average 80 percent, and acute myeloid leukemia (AML) survival rates reach an average of only 40 percent. Now, doctors hope a simple blood test that measures absolute lymphocyte counts (ALC) will help predict survival after five years and the risk of relapse. This information could help doctors determine how aggressively to treat a patient.

According to a Cancer study published online in November, patients with low ALC—the measure of normal immune cells—at two weeks after the initial chemotherapy did not do as well as patients with high ALC. Study investigators examined 10 years of data from 171 newly diagnosed ALL and AML patients under age 21. The six-year survival rate for ALL patients with high lymphocyte counts was 87 percent, while a low count equated to 55 percent survival. In AML patients, five-year survival was 85 percent with a high count, and 28 percent with a low count.

While malignant white blood cells have long been known to influence outcome, Patrick Zweidler- McKay, MD, PhD, co-author of the study, says experts in the field first couldn’t believe normal lymphocytes could have this particular predictive ability. “I agree with the people who say it’s too easy, that it’s been right in front of our noses. But, on the other hand, I can’t ignore the fact that it’s there,” says Dr. Zweidler-McKay, an assistant professor at the Children’s Cancer Hospital at M.D. Anderson Cancer Center in Houston.

And the predictability doesn’t just apply to childhood leukemia. Dr. Zweidler-McKay says other studies have demonstrated the technique’s success in T-cell and follicular lymphomas and Ewing’s sarcoma. “This story is just building and building,” he says. “Every population they’ve looked at, there has been a correlation.”

Now the important question is how to use the test and what to do if a patient’s counts are low. “I’d like to really start making decisions based upon it,” Dr. Zweidler-McKay says. “If you have a predictive ability that’s stronger than anything that’s out there ... it’s on [doctors] to do something about it.”

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Destination
Harmony Hill Retreat Center

The Redwood-Shell labyrinth at Harmony Hill.

Harmony Hill Retreat Center provides a place to escape the stresses of daily life and focus on you—a goal epitomized in the center’s Cancer Program.

Modeled after the internationally acclaimed Commonweal Cancer Help Program, Harmony Hill offers its own cancer retreat at no cost to patients, their companions, and caregivers. The program includes three-day residential retreats and one-day retreats. Built on a 12- acre facility along Hood Canal in Washington, Harmony Hill focuses on helping participants recover quality of life despite the physical, emotional, and spiritual challenges presented by cancer.

During the three-day retreats, participants learn about stress reduction skills and selfcare through meditation, art projects, and group support. In addition to healthy meals, other physical benefits include nutrition classes, yoga, massage, qigong, and other techniques that participants can take home to facilitate their own healing as a supportive adjunct to medical treatment. The number of participants has more than doubled over the past three years, contributing to the growing waiting list for the three-day retreats.

The Center’s one-day retreats include “Tools for the Journey: Living with Cancer,” which provides practical resources and information on healing tools, and “Thriving Beyond Cancer,” which caters primarily to Harmony Hill program graduates. One-day and weekend retreats are available for caregivers.

Harmony Hill also offers special retreats and workshops for minority populations, including African Americans, Native Americans, and lesbians. Visit www.harmonyhill.org for details on upcoming retreats.

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On the Web
www.ovariancancer.org

The Ovarian Cancer National Alliance has launched its own social networking site for patients, survivors, and caregivers to stay connected through an online community. The site offers educational information on ovarian cancer, message boards, and personal profile pages that can include members’ photographs and blogs. While membership for the network is free, participants must register with a valid e-mail address. The organization also has pages on the popular networking sites, MySpace.com and Facebook.com.

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Bookshelf [web exclusive]
Ordinary Miracles: Learning from Breast Cancer Survivors

By S. David Nathanson, MD
Praeger Publishers, 2007

Every month I receive books to review. Some are by cancer survivors, others by doctors who want to impart their wisdom about what patients should do. The decision to review a book is usually based on whether it provides something unique to our readers. To determine that, I begin by reading the introduction—where the author explains the how and why of the book. When I read the introduction of Ordinary Miracles: Learning from Breast Cancer Survivors, I knew I would review the book.

S. David Nathanson, MD, a surgical oncologist and director of Breast Care Services at Henry Ford Health System in Detroit, won me over with two statements. First, he was prompted to write the book by a patient who wanted him to help women cope with their diagnoses by sharing how other patients had coped. Then, he invited the patient, Sally Cole-Saul, to help him develop the format, which explores the common journey every patient travels. 

He chose to tell stories from the patient’s perspective because “99 percent of breast cancer patients are women, and men cannot interpret, evaluate, or even truly understand the emotions and feelings of women who are treated for breast cancer,” he says in the book. I like that he gets it. I like that he wants to do feelings.

The book includes case studies, a formal name for women telling their own stories, each of which has similar headings, such as “A Bump in the Road of Life,” “A Life Beyond Cancer,” “Hope—Again.” The case studies are blended in with the other chapters (Detection, Diagnosis, Surgery, Chemotherapy, Radiation, Support Systems, The Spiritual Connection, Afterward, and Advice).

Everywhere, the information is provided by the women, whether in the case studies or in the other chapters where numerous women comment on the particular subject. They talk about fear, anger, pain, joy, and relief—feelings common to all women with breast cancer.

Dr. Nathanson did an admirable job gathering all the information together, although the book needs more variety in the voices. The case studies, of necessity, are women who were articulate and educated enough to respond in detail to the questionnaire he sent out, suggesting overrepresentation of women from a certain socioeconomic group.

But in the end, we need more books where women talk about feelings. Mostly we all go through the same protocols, choose from the same menu. But the emotional and social circumstances vary with every woman.

However, I have one more issue with the book—its price tag of $49.95, which is uncommonly high. Amazon.com has a few discounted to $34, which is still unaffordable for many women who need it. I’ll be donating our review copy to a local support library. —Kathy LaTour

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The Advocate
Gary Zollinger—A Force for Good

	Gary Zollinger and his wife, Thelissa, at the Gift of the Life and Breath fundraiser in May.

Amid symptoms of increasing coughing and shortness of breath, Gary Zollinger, then 55, knew he wasn’t suffering from the common maladies suggested by his doctors. When his cough got worse, he sought care at the National Jewish Medical and Research Center, where he was diagnosed with stage 4 bronchoalveolar carcinoma, a slow-growing lung cancer.

“The situation for Gary was almost a double tragedy,” says Gary’s wife, Thelissa Zollinger. “Because he had never smoked, his symptoms were passed off as asthma, a bad cold, allergies.”

Although doctors told the couple there was no chance of cure, Gary enrolled in clinical trials, but to no avail. A rarely done double lung transplant prolonged Gary’s life long enough to see the creation of the Gary L. and Thelissa Zollinger Early Detection of Lung Cancer Endowment Fund. Gary died in September at age 58.

Only a week after his transplant, Gary made a goal to become “a force for good”—which would become his motto—for future patients who would struggle with the disease. While still in the hospital, Gary met with representatives from the University of Colorado Foundation about setting up the endowment to fund lung cancer screening research. Completed in December 2006, the endowment has since grown to $300,000, Thelissa says.

A portion of the fund came from donations raised through a 5K run/walk in May named the Gift of Life and Breath (www.thegiftoflifeandbreath.com), held on the one-year anniversary of Gary’s transplant. “We thought we’d get maybe 100 of our friends and neighbors, but it just exploded,” Thelissa says. “When it got to 350 people … we had to shut down the website, and even at that, we still got a number more.” About 400 people attended the race.

The endowment money has been earmarked for early detection research headed by Michael Weyant, MD, a surgeon at the University of Colorado at Denver and Health Sciences Center (who performed Gary’s transplant surgery). “We hope to be able to find not one test but a panel of tests,” Dr. Weyant says, including tests of patients’ blood, serum, and sputum to better identify people who should receive more extensive screening, including computed tomography.

The next step for Thelissa Zollinger is to create a foundation for the endowment. “One of the ways I am dealing with this tremendous loss is following through on his great desire to screen for this deadly disease, and giving people the gift of life and breath beyond a stage 4 diagnosis.”

Do you know a patient, survivor, or caregiver we should highlight in The Advocate? If so, e-mail your nomination to editor@curetoday.com.

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