Legislative Watch
The HPV Debate

In early February, Texas Governor Rick Perry enacted a controversial executive order for Texas to become the first state to require girls entering middle school to receive a vaccine to prevent cancer-causing human papillomavirus, or HPV, although the Texas House passed a bill in mid-March to overturn the mandate. At presstime, the bill awaits a vote by the state’s Senate. New Mexico and Virginia lawmakers passed bills in March to make the vaccine mandatory in their respective states, and more than a dozen other states have authored similar bills.

While more than 99 percent of the 11,000 cervical cancer cases diagnosed each year are caused by HPV, the vaccine Gardasil®, approved in June 2006, only protects against specific types of the virus. Specifically, HPV-16 accounts for half of cervical cancer cases, HPV-18 accounts for as many as 12 percent, and HPV-31 and HPV-45 cause about 5 percent of cases. HPV may cause other cancers, including head and neck cancer, and genital warts.

Gardasil has been a controversial subject among parents, medical professionals and politicians over whether the vaccine should be mandatory. Following Gardasil’s approval, the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommended the vaccine be given to the two million 11- and 12-year-old girls in the United States. (The $360 three-shot vaccine is approved for 9- to 26-year-old females.) Other groups have followed suit, including the American Cancer Society, which issued guidelines in early 2007 echoing the CDC’s decision.

But while many groups have voiced support for the vaccine, controversy exists over whether it should be a requirement to enter school, much like the measles, mumps and rubella immunizations given now. A small group of conservative organizations have publicly opposed the vaccine because HPV is a sexually transmitted disease, while other dissenters argue there are not enough data on the vaccine’s long-term effects in young girls. States considering legislation have included exemptions for moral, medical or religious purposes.

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The Place to Be
Patient Congress

The Patient Advocate Foundation will host the eighth annual Patient Congress in Washington, D.C., on June 25-27. Members of Congress, researchers and survivors will meet with attendees to discuss health care legislation, policy, treatment and life beyond diagnosis. Details at www.pc.patientadvocate.org.

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People Report
New Role for Dempsey; Rest in Peace, Molly

Dr. Derek “McDreamy” Shepherd may help treat patients on the ABC drama “Grey’s Anatomy,” but real-life co-survivor Patrick Dempsey has joined with the drug company Amgen to promote free support services and programs for cancer patients in its Breakaway from Cancer campaign. Dempsey, whose mother is a two-time ovarian cancer survivor, is well versed in the issues involved in cancer care and caregiving. “Iit was much harder the second time around,” he says, admitting that keeping morale up and staying optimistic was a challenge during the recurrence.

Dempsey’s sister, who worked at the hospital where their mother was being treated, helped navigate them through the maze of medical decisions and cancer jargon. “I think it’s overwhelming for a patient or a caregiver to go in and hear everything that is being told to them,” Dempsey says. “[My sister] had an inside track and the knowledge to take us through and around certain areas we were unclear on and deciphering what the doctor was telling us.” Because of his family’s experience, Dempsey learned the importance of support services that organizations like the National Coalition for Cancer Survivorship and The Wellness Community offer—enough that one of his goals is to open up a Wellness Community in his home state of Maine. in addition, his Ford racing team, Hyper Sport, has adopted Breakaway from Cancer as its official charity.

Amgen’s campaign has raised $1 million to support TWC, a nonprofit that offers free support and education to survivors, and the NCCS, the oldest survivor-led advocacy group in the country. More information on the campaign can be found at www.breakawayfromcancer.com.

Molly Ivins, best-selling author and syndicated columnist, died of breast cancer in late January at age 62. Ivins was known for her sharp political wit and unique Texas style of writing. Her positions ranged from co-editor of the Texas Observer, a liberal political newspaper based in Austin, to reporter for The New York Times. Ivins’ columns quickly became popular and began syndication through Creator Syndicate in 1992—appearing in nearly 400 different publications. She was first diagnosed with inflammatory breast cancer in 1999 followed by a recurrence in 2003 and again in late 2005.

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Prevention
Evista vs. Femara in Breast Cancer

Landmark data from the STAR trial comparing tamoxifen and Evista® (raloxifene) showed Evista was comparable to tamoxifen in reducing the risk of invasive breast cancer with fewer side effects. Now, with approval pending for Evista in this new setting, researchers had hoped to launch a follow-up phase III trial in April, known as the STELLAR trial, to compare the impact of Evista in high-risk women with the commonly used breast cancer prevention drug Femara® (letrozole). Budget cuts for the National Cancer I institute and questions about the trial’s $100 million price tag led the NCI to put the launch of the STELLAR trial on hold in March.

While both tamoxifen and Evista reduced the risk of invasive breast cancer by half in the STAR trial, Evista didn’t cause uterine cancer and blood clots, whereas tamoxifen did. “Iin various adjuvant trials, letrozole was more effective than tamoxifen in reducing breast cancers in the opposite breast,” says Lawrence Wickerham, MD, associate chairman of the NCIi-funded National Surgical Adjuvant Breast and Bowel Project, sponsor of both the STAR and STELLAR trials. “The estimates are that letrozole may be able to reduce the risk of breast cancer from 70 to 75 percent in a group of healthy women at increased risk for the disease.” The STELLAR trial will also examine incidence of noninvasive breast cancers, as well as side effects, risk of non-breast cancers, quality of life and issues regarding bone, heart and circulatory system health.

The trial expects to recruit close to 13,000 high-risk postmenopausal women, and will follow them for five years. For more on breast cancer prevention, watch for CURE’s special issue on breast cancer in May.

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House Call
Q&A: Functional Imaging

Q: In addition to diagnosing cancer, how can doctors use imaging to determine if treatment is working?

A: New imaging technologies that measure the extent of drug-target interactions are the latest in biomarker discoveries. Biomarkers can also be used to predict cancer recurrence, indicate the presence of cancer—such as prostate-specific antigen (PSA) for prostate cancer or CA-125 for ovarian cancer—or to determine which patients will respond to certain therapies, as is the case for Herceptin® (trastuzumab) in HER2-positive breast cancer.

The National Cancer institute, the Food and Drug Administration and the Centers for Medicare & Medicaid Services—all part of the U.S. Department of Health and Human Services—are collaborating on a project to determine if dynamic, functional imaging technology can be used to measure change in a tumor following treatment, thus making it a biomarker of therapeutic response.

Ongoing projects include fluorodeoxyglucose- positron emission tomography (FDG-PET) scanning of patients being treated for lung cancer or non-Hodgkin’s lymphoma. The technique employs an imaging tool used to diagnose cancer (PET) with a fluorescent marker (FDG) to reveal tumor growth. Cancer cells, particularly those from aggressive tumors, consume significantly larger amounts of FDG, a type of sugar, than surrounding normal tissue. Presence of FDG can be detected by PET imaging in tumors as small as 1 centimeter.

FDG-PET studies could have an enormous impact on patient care by validating a tool to identify treatment response. Doctors would be able to compare PET scans taken before and after therapy to determine if metabolic activity of cancer cells has increased or decreased rather than waiting for the volume of the tumor to change, which could take weeks or months. Results from these trials will be available on the NCIi’s cancer Biomedical informatics Grid™ website at cabig.cancer.gov.

—Anna D. Barker, PhD, is deputy director of the NCI and deputy director for Advanced Technologies and Strategic Partnerships & Gary Kelloff, MD, is special advisor to NCI’s Cancer Imaging Program in the Division of Cancer Treatment and Diagnosis.

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Childhood Cancer
Survivors at Risk for Cognitive Dysfunction

Of the 10 million or so cancer survivors in the United States, experts estimate more than a quarter million were diagnosed before age 21. Although survival has improved, childhood cancer therapies can have a long-term impact, including congestive heart failure, second cancers and cognitive dysfunction.

Since 1993, the Childhood Cancer Survivor Study has tracked the long-term and late effects associated with cancer therapy. One aspect of the study found that childhood cancer survivors who received therapy in the 1970s and ’80s were three times more likely to develop a chronic health condition later in life than their healthy siblings. Specifically, survivors were eight times more likely to experience severe chronic disorders, such as cognitive dysfunction. This effect was found to occur more often in survivors with cancers of the central nervous system, such as medulloblastoma, a common type of childhood brain cancer.

“What we’re referring to is the changes that are largely related to radiation [to the brain] and are severe enough to either affect one’s schooling or their ability to live independently for those in the severe category,” says Kevin Oeffinger, MD, lead author on the CCSS analysis published last year in The New England Journal of Medicine that studied chronic health conditions in adult survivors of childhood cancer—one of the more than 70 articles published from the CCSS.

Dr. Oeffinger says although survivors with severe cognitive dysfunction made up less than 3 percent of study participants, the results may be significantly understated. For the CCSS analysis, severe cognitive dysfunction was defined as patients who are not able to live independently, for example.

“What we’re talking about are changes largely related to radiation and are severe enough to either affect one’s schooling or their ability to live independently for those in the severe category; or those in the moderate would affect the type of position they would be able to get in a job,” says Dr. Oeffinger, who notes the reporting method may significantly underestimate the number of patients who are experiencing the more moderate dysfunction that might be affecting them in school or work.

Researchers are currently analyzing data collected in the past two years, which will go into greater detail with how survivors are doing in regards to functioning. Results are expected in the next year or so.

Evidence suggests one reason this high-intensity treatment may cause cognitive dysfunction is the resulting reduction of normal-appearing white matter in the brain, says Heather Conklin, PhD, a pediatric neuropsychologist in the division of behavioral medicine at St. Jude Children’s Research Hospital in Memphis. In contrast to gray matter, which controls sensory perception and motor function and is made up of neurons, white matter, or myelin, insulates nerve fibers and facilitates the high-speed transmission of nerve signals throughout the brain. White matter continues to increase throughout a person’s 20s and 30s, but “we’ve been seeing in structural neuroimaging a reduction in normal-appearing white matter in some children that have been treated with chemotherapy and radiation therapy,” Conklin says.

In addition to the intensity or amount of chemotherapy or radiation directed at the brain and spinal cord, scientists have found other factors that may increase risk for cognitive problems, including the location of the tumor, female gender and age at treatment—children who are treated at a younger age are at greater risk for cognitive dysfunction over time. The time since treatment is also an important indictor.

“In some children, you won’t see cognitive dysfunction in the first few years,” Conklin says. “The process is a gradual one that emerges years after they completed their treatment.”

Problems with attention, working memory (the ability to hold and manipulate information) and slower processing speed, such as the speed of problem solving, reading and writing, are symptoms survivors and their caregivers should watch for if they are at risk for cognitive dysfunction.

“We recommend they first see a clinician that is familiar with the health problems of pediatric cancer survivors and be evaluated, and if needed, we will do cognitive testing,” Dr. Oeffinger says. Cognitive testing gives doctors a better understanding of where cognitive limitations may or may not exist, and allows for development of a plan to help the survivor with school or in the workplace.

As late effects, such as cognitive dysfunction, have become better understood, treatments have changed. In particular, most patients with acute lymphoblastic leukemia (ALL) are no longer treated with radiation, and when they do need radiation, lower doses are used. Also, the radiation doses used to treat patients with brain tumors today is generally lower that doses used in the ’70s and ’80s.

“We anticipate that ALL survivors treated now will have a lower risk of cognitive problems than those treated back in the 1970s,” Dr. Oeffinger says. “And likewise, we anticipate our brain tumor survivors—by reducing doses and fields of radiation—they will also fare better than patients treated back in the 1970s.”

—Elizabeth Whittington

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Destination
Stowe, Vermont

Photo courtesy of Stowe Area Association

A small town known for its skiing and tourism, Stowe is also well-known in the cancer community. Stowe residents open their town each May to cancer patients, survivors and caregivers for the Stowe Weekend of Hope—a three-day retreat filled with workshops and lectures on the latest in cancer research, prevention, healing and support. Events for this year’s weekend from May 4-6 include yoga, journaling, meditation and a candlelight vigil. For those new to the Stowe experience, lodging is free in one of the many inns or bed and breakfasts that dot the landscape. For returning guests, discounted lodging is offered. Survivors who need transportation to the event can look to Amtrak, which provides a limited number of free passes on the “Train of Hope” traveling from Washington, D.C., with stops in Philadelphia and New York City. Registration is available at www.stowehope.org, or call 800-GO-STOWE (467-8693) for more information. For those who can’t attend this year, the 2008 Stowe Weekend of Hope will take place May 2-4.

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On the Web
www.komen.org

To celebrate its 25th year, the Susan G. Komen Breast Cancer Foundation made some changes—most notably its name. Now Susan G. Komen for the Cure, the nonprofit entered 2007 with a new name, a trendy advertising campaign and a revamped website packed with videos, newsletters, message boards, events and more. The group also launched www.25komen.org, where people can create an online network of family and friends called a Promise Circle to raise awareness of breast cancer.

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Bookshelf
Help Me Live

20 Things People with Cancer Want You to Know
By Lori Hope

Celestial Arts, 2005

This is not a new book, but I'm glad someone sent it our way because I needed it. Even though I am a 20-year survivor, I needed to be reminded about what people in the throes of cancer need, and Lori Hope’s book is perfect.

Hope wrote the book after her own lung cancer experience to help caretakers and friends understand more fully that a thoughtless word or gesture—innocent as it may be—can cause remarkable pain. She interviews survivors and professionals about specific issues of cancer, such as the cancer patient’s right to decide when and how to tell people.

Each of the 20 chapters starts with a quote, making the book read very personally. in each chapter she tells the stories of survivors and the issues they confronted with partners, family, friends and coworkers. My favorite chapter quote—“I am more than my cancer; treat me kindly, not differently”—was a wake-up call for me as i help a friend who suffered a recurrence. I was gently reminded that my friend values her independence and my insistence to do things for her is not helping. But asking her to call me when she needs me is helping.

This book is not just for its intended audience of friends and caregivers, but for cancer patients too. in part, it affirms the cutting comments we made when Uncle Jack said something tasteless and painful. But in addition to reminding me of many challenging people in my journey, the stories also revealed ways I could have handled them a little better. —Kathy LaTour

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The Advocate
Bob Hammer: Having a Ball

When Bob of San Carlos, California, was diagnosed with testicular cancer for the second time in 2000, he underwent 26 rounds of chemotherapy over seven months to kill the stage 3 cancer. During his therapy, he actively raised money for the Lance Armstrong Foundation to participate in the 2001 Ride for the Roses event in Austin, Texas. One week out of treatment, Hammer, still bald from chemotherapy, was wearing the yellow jersey that signified his top-fundraiser status during the event—surpassing the $10,000 goal needed to be at the elite level.

Bob Hammer with his family on a recent Disneyland trip.

The next night, Hammer was introduced to other testicular cancer survivors, who introduced him to Armstrong and Craig Nichols, MD, one of Armstrong’s oncologists who talked with Hammer about his diagnosis and treatment over dinner that night. Afterward, Dr. Nichols and Hammer’s oncologist discussed whether or not Hammer needed surgery that was scheduled for the following week to remove the remaining testicle and render him infertile. He had little chance to bank sperm when he was initially diagnosed because he had to begin chemotherapy immediately.

“At the time, we were just grateful for the daughter we had, so we didn’t store sperm,” says Hammer, 38. “But then, we were faced with the surgery and no chance to have any other children.” Hammer’s medical team, along with Dr. Nichols, re-evaluated his scans and determined the suspicious areas were scar tissue and surgery wasn’t necessary. Two years later, the Hammers welcomed their second child, Josh.

“When Josh was born, I wanted to give back to the LAF [for putting me in the right place at the right time],” says Hammer, who today is cancer-free. Believing he could use his professional skills to raise money for the LAF and other cancer organizations, he established the Have a Ball Foundation (www.haveaballgolf.com) that holds an annual golf tournament in Sunnyvale, California, complete with corporate sponsorships and donations.

With a goal of $2,500 his first year, he raised more than $35,000. in 2006, it topped $60,000. His goal for 2007 is $100,000. “Iit’s just a golf tournament at a community course, but it’s amazing,” Hammer says. “It just snowballed.”

Running the nonprofit has become almost a full-time job for Hammer. He hopes to expand the golf tournament to New York and Los Angeles. And to think it all started with a chance meeting.

“A couple of guys who didn’t have to do anything turned around and introduced me to Lance Armstrong, who introduced me to his doctor, and the next thing is i have a kid, who without any of these choices, would not be here.”

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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