Yearly Archives: 2010

Cel-Sci to bump standard of care in head, neck cancer

Author: Catherine Shaffer

Cel-Sci Corp. began a carefully designed Phase III trial of Multikine, its investigational immunotherapy for head and neck cancer. Because Multikine is designed to recruit the support of a mostly healthy immune system, Cel-Sci is making a headlong charge at the goal of first-line therapy, instead of trying to develop the product in patients who have already received surgery, radiation and chemotherapy, and have suppressed or damaged immune systems as a result. If Cel-Sci can prove the therapy works in the narrow three-week testing window granted by the FDA, Multikine stands to replace a standard of care that has changed little in half a century.

“It makes no sense to develop an immunotherapy product for late-stage patients. You should develop it as a first line therapy, ahead of radiation or chemotherapy,” Cel-Sci CEO Geert Kersten told BioWorld Today.

Vienna, Va.-based Cel-Sci’s clinical trial plan takes advantage of a nearly inevitable delay of up to six weeks between diagnosis and surgery in most head and neck cancers. The FDA has allowed Cel-Sci a three-week period to give Multikine to patients before they commence with surgery, radiation, and chemotherapy. This will not deprive any patients of the best possible standard-of-care while they also try an experimental therapy.

Head and neck cancer strikes about 500,000 people annually worldwide. Some causal factors include smoking, drinking and chewing tobacco. Most cases are diagnosed outside the U.S., and about two-thirds of patients appear with advanced disease. The standard treatment for it is surgery followed by chemotherapy with platinum-based drugs (carboplatin or cisplatin) and radiation, which is sometimes done concurrently with chemotherapy. The protocol is arduous, to say the least, and typically only extends survival by six or seven months.

Most immunotherapies are antibodies specifically targeted at a type of cancer cell. Multikine is a mixture of natural cytokines that Cel-Sci said simulates the body’s immune response. It includes interleukins, interferons, chemokines and colony-stimulating factors.

The trial will enroll 880 patients at 48 clinical centers in the U.S., Canada, Hungary, Poland, Ukraine, Russia, India, Israel and Taiwan. According to Kersten, the trial design is highly portable because the same standard of care for head and neck cancer is used around the world.

Cel-Sci partners Teva Pharmaceutical Industries Ltd., of Jerusalem, and Orient Europharma Co. Ltd., of Taiwan, will carry out studies in Israel and Taiwan, respectively, under the supervision of Cel-Sci’s global contract research organization.

Cel-Sci has not partnered Multikine in major markets like the U.S. and Europe. “We can sell ourselves there,” said Kersten. Teva and Orient will help Cel-Sci access markets in the developing world. Taiwan, especially, will be an important market, since the use of betel nut (a mild stimulant) in that country leads to a high rate of head and neck cancers.

In order to maximize Multikine’s chances of approval, Cel-Sci selected overall survival as its endpoint. Overall survival is the most bullet-proof of clinical endpoints, and, said Kersten, “Survival is the endpoint [FDA regulators] want to see these days.”

In Phase II studies, Multikine boosted overall survival by 33 percent over standard of care. Patients in the Phase II study included those with advanced primary head and neck cancer who were scheduled for their first treatment, and they were given Multikine for three weeks before the standard course. Results from the study were published in the May 2005 edition of the Journal of Clinical Oncology. The median follow-up period for the patients was 3.2 years. Survival and two-year local regional control beat the rates reported in scientific literature from 39 trials between 1987 and 2004. (See BioWorld Today, Feb. 22, 2006.)

Based on the Phase II results, Cel-Sci is optimistic about hitting statistical significance with at least a 10 percent increase in survival.

Multikine’s route of administration also differs from other immunotherapies, which are given intravenously. According to Kersten, the goal is to stimulate a localized immune response at the site of the tumor.

The therapy is injected in the vicinity of the tumor not in the tumor itself. There are two reasons for that. One is that injection directly into the tumor risks dispersing tumor cells. The second, larger reason, is that Cel-Sci is attempting to target the therapy at micrometastases that form outside of the main tumor.

It is micrometastases that cause recurrence, said Kersten, because they can’t be removed surgically. The Multikine strategy for increasing survival is to decrease the odds of metastasis by wiping out the micromets at the very earliest stage.

Kersten said that the drug has been given to 220 patients to date, with no serious adverse events. The low toxicity of Multikine will be an asset to patients who will be subjected to the highly toxic standard-of-care regime later. “Our drug wouldn’t work if it had any toxicity. You can’t add a toxic drug to anything that is horribly toxic,” he said.

December, 2010|Oral Cancer News|

In India, an epidemic of oral cancer

Author: Adi Narayan

Safiq Shaikh was 13 when he began chewing a blend of tobacco and spices that jolted him awake whenever his job at a textile loom got too dreary. Five years later, doctors in Mumbai lopped off his tongue to halt the cancer spreading through his mouth.

Shaikh believed the fragrant, granular mixture he chewed, known in India as gutka, was harmless, so at first he ignored the milky lump growing inside his mouth. Now he is one of about 200,000 Indians diagnosed with a tobacco-related malignancy this year, says his surgeon, Dr. Pankaj Chaturvedi, who works at Tata Memorial Hospital in Mumbai.

Chaturvedi says a group of entrepreneurs known as “gutka barons” bear much of the blame for this epidemic by mass marketing a mix of tobacco and areca nut for 1 rupee (2 cents) a pack on street corners across India. Sales of chewing tobacco in India, worth 210.3 billion rupees ($4.6 billion) in 2004, are on track to double by 2014, according to Datamonitor, the international research firm. Before, a traditional chewing mixture, known as paan, came with or without tobacco. It had to be handmade, was messy to carry around, and lacked modern packaging. “Now you have an industrial version of a traditional thing” spurring demand, says Chaturvedi.

On Dec. 7, India’s Supreme Court banned the sale of tobacco products in plastic wrappers as of Mar. 1, citing harm to public health and environmental damage from improper disposal of the packets. The ban on the cheap, colorful packaging was aimed directly at the gutka merchants. Yet the sale of gutka remains legal, and marketers may switch to other packaging.

Gutka creates a tingling sensation on the tongue. It’s the abrasion of the mouth’s lining—caused by coarse chunks of areca nut—that can accelerate the effect of nicotine and cancer-causing chemicals, according to Dhirendra Sinha, a technical officer for tobacco control at the New Delhi office of the World Health Organization (WHO).

Street vendors of gutka crowd around schools, breaking Indian law, which prohibits the sale of tobacco products within 100 yards of educational institutions, says Devika Chadha, a program director at the Salaam Bombay Foundation, a nonprofit that works with schools to educate children about tobacco’s dangers. “I have seen many children who started chewing gutka when they were 8 or 10 years old and got cancer in their teens,” Chaturvedi says as patients with tubes protruding from their throats wait their turn outside his office.

While Indian law bans the consumption of tobacco products before the age of 18, enforcement of the law is spotty, says Chadha. The federal government says it’s up to the states to enforce these laws, and often the states lack the resources. According to the Press Trust of India, the Indian news service, a minister in the Maharashtra state government, which includes Mumbai, said on Dec. 24 that school principals will be given authority to fine gutka vendors who set up stalls within 100 meters of their school.

In Khetwadi, a poor Mumbai neighborhood, three street vendors on a recent morning set up stalls about 55 yards from Sant Gadge Maharaj College as students gathered near the school gates. Javeed Shaikh, 21,(no relation to Safiq Shaikh) says he began chewing gutka three years ago and now consumes two or three packets a day. “I’m trying to quit, and it’s hard,” he says.

Rajendra Malu, who owns the company that makes the Jhee brand of gutka, says a pouch contains three-fourths areca nut and 12 percent tobacco flakes, as well as proprietary fragrances he won’t disclose. A chemical analysis of gutka in a 2008 report from the WHO found that a typical mix contains chromium, nickel, arsenic, lead, and tobacco-related nitrosamines, all known carcinogens.

Malu estimates he sold 250 million packets last year made at his plant in Gujarat state. He shrugs at the mention of a link between gutka and cancer. “I have been chewing tobacco for the last 37 years, and I am not suffering from anything,” he says. On being asked about children’s consumption of gutka, he replies, “This is not a fact.”

A survey of 1,500 Mumbai residents aged 13 to 15 found that double the students identified themselves as tobacco chewers vs. a decade ago, according to Healis, a public health research institute. In accordance with the law, packages of gutka bear a health warning and the image of a scorpion to indicate its use has been linked to cancer. That’s not effective, says Jagdish Kaur, chief medical officer at the tobacco control unit of the Ministry of Health & Family Welfare. While the government has just mandated a new set of warning labels on tobacco products to show graphic images of mouth cancer, the industry has gotten a one-year delay in publishing them.

Gutka brings on cancer much faster than its traditional handmade counterpart, says Saman Warnakulasuriya, a professor of oral medicine at King’s College London. The tobacco releases nitrosamines while the chemicals in areca nut stimulate the production of collagen, a protein that thickens the mouth’s muscles. Abrasions from the areca expose the blood vessels in the mouth, a trauma that can take several hours to heal, according to Chaturvedi. “This injury and healing process is going on for 24 hours,” he says: Over time it stiffens the inner lining of the mouth, resulting in a pre-cancerous condition called oral submucous fibrosis. Once a a disease of the elderly, it is now spreading to young Indians, according to a government report.

Patients who previously could grab a sizable chunk of an apple in a single bite are eventually able to open their mouth to just about the size of a grape. “Before I could put four fingers inside, now I can only put two,” says Aqeel Shaikh, 32, Safiq’s older brother. Shaikh says he chewed six packets of gutka a day for six years before he gave up the habit.

The bottom line: A mass-produced chewing tobacco in India that is popular among teenagers is triggering a surge in mouth cancers.

Narayan is a reporter for Bloomberg News.

December, 2010|Oral Cancer News|

Reynolds targets smokers trying to quit with new snus campaign

Author: staff

R.J. Reynolds Tobacco Co. wants cigarette smokers to consider Snus if they are trying to quit.

According to the Winston-Salem Journal, the giant tobacco company has launched a national campaign marketing Camel Snus as a potential New Year’s Resolution solution for smokers. It’s the company’s first campaign aimed specifically at encouraging smokers to switch to Camel Snus, according to David Howard, a Reynolds spokesman.

“A lot of adults make a decision to quit smoking this time of the year,” said Howard in the report. “For those making that attempt, but still wanting the pleasure of tobacco, we’re saying ‘Here’s an option.”

Reynolds has run ads in large-circulation magazines such as Entertainment Weekly, People, Sports Illustrated, Time and US Weekly, as well as free and alternative publications, according to the report.

In the “2011 smoke-free resolution” ad, Reynolds said it supports smokers who have decided to quit using tobacco. “But if you’re looking for smoke-free, spit-free, drama-free tobacco pleasure, Camel Snus is your answer,” the ad’s text reads.

The ads also contain a large warning that “smokeless tobacco is addictive.”

Howard said that the “drama-free” reference is aimed at adults who want to use tobacco products in restaurants, bars and other social outlets where smoking is discouraged or banned.

Reynolds’ print ads are part of a “take the pleasure switch challenge” campaign tied to an age-restricted Camel Snus Web site.

As might have been expected, some anti-smoking groups are upset by the ads.

“The ads are trying to take advantage of people trying to end all uses of tobacco,” said Matt Myers, president of the Campaign for Tobacco-Free Kids. “If a smoker does that, switch to smokeless, they’ll be worse off than if they had quit.”

Snus comes in a small pouch that is placed between the lip and gum. The tobacco is pasteurized, not fermented, and it contains less moisture and salt than moist snuff. It also does not require the consumer to spit.

Although Reynolds does not dictate the price of Camel Snus at retail, the price is comparable to a premium pack of cigarettes, which typically sells for $4 to $4.50 in North Carolina.

Reynolds began its first trial of Camel Snus in April 2006, with national distribution commencing in January 2009. The ads do not make any claims of reduced health risks with a potential switch.

Some anti-smoking advocates are encouraging the U.S. Food and Drug Administration to allow the advertising of smokeless tobacco as less harmful than cigarettes if such claims can be proven through research. But other anti-tobacco advocates oppose marketing smokeless products under cigarettes’ brand names because of those brands’ appeal to youth, according to the Winston-Salem Journal report.

December, 2010|Oral Cancer News|

Radiation exposure increases kids’ risk for developing thyroid cancer later in life

Author: staff

University of Rochester Medical Center researchers have revealed that children who are exposed to head and neck radiation during a CT scan or cancer treatment may have an increased risk of thyroid cancer in adulthood.

The paper, which was published in the December issue of the journal Radiation Research, provided findings that may explain why the rates of thyroid cancer are continuing to rise, as the general public is becoming increasingly exposed to radiation through some medical procedures.

“Ionizing radiation is a known carcinogen and, in fact, about 1 million CT scans are performed every year on children five years or younger,” said lead author Jacob Adams. “Although CTs and other imaging tests are an important diagnostic tool, with everything comes a risk.”

He and his colleagues assessed a group of patients who had been treated with chest radiotherapy during infancy as a result of an enlarged thymus. Of the 1,303 individuals evaluated, 50 developed thyroid cancer, compared to only 13 controls out of 1,768 people who had not undergone radiation therapy.

According to the researchers, the study supports previous evidence showing that the risk of thyroid cancer due to radiation exposure may continue for children for a median of 57.5 years.

December, 2010|Oral Cancer News|

Robotic tongue cancer surgery-Mayo Clinic

Author: staff

Fighting cancer is not easy. Chemotherapy, radiation and surgery can be very hard on your body. Take head and neck cancers, for example. These tumors are often hard to reach. Doctors have to cut through bones such as your jaw to reach them. Now, doctors at Mayo Clinic are using robots to access these cancers through your mouth, leaving face bones intact.

December, 2010|Oral Cancer News|

Good speaking, swallowing after chemoradiotherapy for head/neck cancer

Author: Fran Lowry

Most patients with locoregionally advanced head and neck cancer who were successfully treated with intensive chemoradiotherapy had no residual deficits in speaking or swallowing after their treatment, according to the results of a study done by University of Chicago researchers.

The study appears in the December issue of the Archives of Otolaryngology–Head & Neck Surgery.

Of 163 patients with head and neck cancer who were assigned a speaking score an average of 35 months after completing treatment, 84.7% were found to have no lasting difficulties and were given a score of 1 on a scale of 1 to 4, with 1 being the best and 4 being the worst function.

In addition, among 166 patients who were assigned a swallowing score an average of 35 months after treatment, 63.3% were found to have no lasting difficulties swallowing and were given a score of 1.

“We weren’t surprised by our findings,” senior author Joseph K. Salama, MD, told Medscape Medical News. “However, it was nice to quantify formally our clinical impressions—that most patients in the long run do well.”

Dr. Salama was with the University of Chicago, Illinois, at the time the study was conducted and is now at Duke University Medical Center in Durham, North Carolina.

Expert Disagrees
However, Robert L. Ferris, MD, PhD, professor and vice chair of the Department of Otolaryngology at the University of Pittsburgh Medical Center in Pennsylvania, disagreed with the view that so many patients with head and neck cancer retain good speech and swallowing function after such intensive treatment.

Pointing out that the study’s results are from a single institution, Dr. Ferris told Medscape Medical News that “the problem is there are good data on the other side. Speech and swallowing outcomes are clearly negatively affected by chemoradiation.”

He pointed out that a paper by Machtay et al (J Clin Oncol. 2008;26:3582-3589) showed the opposite results. “This has multicenter data from 3 prospective clinical trials that showed a 43% rate of long-term side effects and toxicities—data that conflict with this study,” he said.

Those With Hypopharyngeal and Laryngeal Cancers Fared the Worst
The aim of the study was to identify factors that influenced long-term speech and swallowing outcomes after organ-preserving therapy. The cohort was drawn from a multi-institutional phase 2 study of 222 patients with locoregionally advanced head and neck cancer (stage IV nonmetastatic or stage III base of tongue or hypopharyngeal tumors) who received treatment between 1998 and 2002.

Patients enrolled in this trial received induction chemotherapy consisting of carboplatin and paclitaxel, followed by chemoradiotherapy with paclitaxel, fluorouracil, hydroxyurea, and 1 of 3 radiation dose levels. Of the original cohort, 184 were alive and free of locoregional recurrence at the outset of the current study.

In addition to the finding that most patients maintained normal or near-normal speaking and swallowing function after treatment, the authors found that female sex, smoking history, hypopharyngeal or laryngeal primary sites, and poor response to induction chemotherapy were factors associated with worse speaking outcomes. Factors that were associated with worse swallowing outcomes included advanced patient age, poor performance status, primary site, and neck dissection.

Patients who had hypopharyngeal or laryngeal tumors had significantly worse speaking outcomes than patients with primary sites in other locations (P < .001), and they also exhibited a trend toward worse swallowing outcomes (P = .17).

“These results were in line with prior work from our group which showed that pretherapy swallowing evaluation was worse for hypopharyngeal patients, and early posttherapy swallowing evaluation was worse for those sites as well,” Dr. Salama told Medscape Medical News.

“This work is really the first step that defines what our outcomes at minimum should be,” he added. “Further work needs to be done to identify ways to further improve swallowing and speech with modifications in radiation [and] surgical techniques, as well as methods to assist patients during and shortly after treatment with exercises.”

Results Reflect the Work of a Group at the Top of Its Game

The stellar study results are most likely because the University of Chicago group comprises world-class experts in what they do, Dr. Ferris said. In their hands, the results would be excellent, but Dr. Ferris was skeptical that similar results would be the norm in community centers throughout the United States.

“I think a generic statement that people just do great with chemo and radiation would generate a lot of argument at our meetings,” he said. “Their good outcome could be a reflection of a group who is at the top of their game.

“But do community oncology centers read this and say, ‘OK, I can give that regimen and my patients will all do great’? That would be a concern,” he added. “I think there is skepticism that aggressive, 3-drug chemo followed by combined chemo and radiation for 16 weeks can be managed by less experienced individuals who see a lower volume of these patients. There is skepticism that they could get the same good results in speaking and swallowing.”

The University of Chicago team, “because of their long-term experience and expertise, their multidisciplinary, team-oriented approach, may be more capable of managing the speaking and swallowing and optimizing those outcomes,” Dr. Ferris noted. “Whereas we see results not being the same when translated out into less experienced, community-based oncology practices.”

The study was supported by the Robert and Valda Svendsen Foundation. Dr. Salama and Dr. Ferris have disclosed no relevant financial relationships.

Source: Arch Otolaryngol Head Neck Surg. 2010;136:1226-1234. Abstract

December, 2010|Oral Cancer News|

Californians continue to kick the cigarette habit

Author: Molly Hennessy-Fiske, Los Angeles Times

The percentage of California adults who smoke has continued to drop more than the national average, according to new data released Monday by state health officials. Still, deep disparities exist depending on gender, education, income, ethnicity and region.

Overall, Californians remain significantly less likely to smoke than people in the rest of the country, with 13.1% of adults surveyed statewide saying they smoked last year compared with 21% of adults nationwide.

The rate was even lower in several Southern California counties, including Los Angeles (10.4%), Orange (10.9%), Ventura (11.8%), Riverside and San Bernardino (each12.7%), according to a 2008 telephone survey.

“We have saved billions of dollars in healthcare costs that have been averted,” Kimberly Belshé, the state’s secretary of Health and Human Services, said Monday at a news conference near downtown Los Angeles to release the figures and display the state’s latest anti- smoking advertisements.

Still, she said, “these prevalence rates also tell us we have more work to be done.”

As of last year, California had seen a 38% decrease in smokers since 1990, when public health officials created the California Tobacco Control Program, funded by Proposition 99. The smoking rate is expected to decrease to 12.6% this year, close to the national goal of 12% by 2020. Only Utah reports a lower rate of smokers.

The downward trend in California is moving faster than the nation’s, which has seen a smaller decrease in the smoking rate, down to 21% from 26% in 1990, according to the Centers for Disease Control and Prevention.

But rates within the state vary, in some cases widely. Many rural counties had rates of 17% or higher, including Lake (31.6%), Tehama (22.8%), Tuolomne (21.9%) and Humboldt (17.7%). Northern and eastern parts of the state have seenthe least decline in smoking since 1990.

Men still smoke at higher rates than women, 14.9% compared to 8.4% as of 2008.

College graduates smoked at less than half the rate of those without college degrees, about 6%. Among households with an income of $150,000 or more, about 8% smoked, while about 20% living in households earning less than $20,000 smoked as of 2008.

About 12.7% of whites smoked as of 2008, compared to 14.2% of African Americans, 10.2% of Latinos and 8.1% of Asians as of 2008.

Asian and Latino men smoked at nearly three times the rate of female counterparts. Among women, African Americans had the highest smoking rate (12.1%), followed by whites (10.8%), Latinos (5.3%) and Asians (3.8%).

“There are just unacceptable disparities across racial groups in the prevalence of smoking,” said Dr. Mark Horton, the state’s public health director. “We think we can really target some of those disparities as we move forward.”

Belshé said public health officials also plan to work with counterparts in local communities to better understand what prevents certain ethnic groups from smoking, particularly Latinos.

Two of the four state-sponsored ads unveiled Monday featured Debi Austin, 60, a former smoker and emphysema survivor from Canoga Park. Austin, who spoke Monday, rose to fame in the 1990s after a state anti-smoking ad showed her smoking through the laryngectomy hole in her throat.

Austin said she hopes people will see her and think twice about lighting up, especially young people.

“I am the worst case scenario that your mother told you about,” Austin said. “I am the walking dead, the cast-off of the tobacco industry that they can’t fix, they can’t heal.”

In addition to those ads, which will begin airing next month, state officials plan to release ads next spring in Spanish, Korean, Mandarin and Vietnamese.

Some ads will emphasize the environmental effect of smoking. Cigarette butts are not biodegradable and account for 34% of litter collected statewide, polluting beaches, clogging storm drains and igniting wildfires, according to officials.

“We want everyone who smokes to rethink their practice of flicking it out the window and onto the ground,” Horton said. “It’s bad for them and bad for the environment.”

Horton said he was hopeful that Californians will kick the habit in the New Year. According to the latest survey, 60% of those smoking statewide said they have tried to quit during the last year, including 76% of smokers age 18 to 24.

December, 2010|Oral Cancer News|

World’s largest oral cancer support group is helping thousands worldwide

Author: staff

It’s no secret that people don’t want to hear their name and cancer in the same sentence. When Oral Cancer Founder Brian Hill was diagnosed with oral cancer in 1999, he had a lot of questions. Brian recalls, “When I was going through treatment I remember thinking, ‘When am I going to get rid of all these sores in my mouth? What about tasting things again?’ I was desperate to find someone to talk to who had gone through the same thing I was experiencing but there was nowhere to go.”

Brian decided to take matters into his own hands and become a student of the disease. With a small budget, he founded the non-profit Oral Cancer Foundation, and launched a Patient/Survivor Support Forum shortly after completing treatment for the disease. Today, eleven years after Brian faced dim prospects as a stage 4 cancer patient, the Foundation’s Survivor/Patient forum is the world’s largest support group for oral, head and neck cancers. The message boards have thousands of individuals involved; survivors, patients and caregivers, as well as doctors and nurses – posting real-time, asking for, or providing information and support to those just starting on this path. The OCF forum is a free, anonymous, safe environment for patients to get the answers and support they need 24/7/ 365 days a year. Patients and caregivers worldwide are interacting with each other.

Currently more than 7,650 members on the forum interact with one another on a daily basis; tens of thousands of non-participants read the board routinely. David Hastings, a 1,000+ poster said, “Daily I feel I have learned something new that may be of some benefit to a future oral cancer patient.” This comes as no surprise to Jamie O’Day, the Treatment Facilities Coordinator for the Foundation. “The OCF members come from all walks of life; they bring different ethnicities, financial situations, life experiences, and treatment experiences to the table. Posters here have discussed every aspect of the disease, treatment, and the emotional roller coaster that it puts people on.”

Jamie adds, “The people on the forum are the heart and soul of OCF. It’s a beautiful thing to see these people, who don’t know each other and have never met, yet share a common battle and genuinely want to help each other out; even when they may be going through the hardest time of their lives. Many long-term friendships have started here.”

Although the Oral Cancer Foundation is located in the US, the web forum has the capacity to connect people that are affected by this disease from around the world. Gabriele, who lives in Australia, was diagnosed with oral cancer in 2006 and has been active on the forum since then. Gabriele admits, “I did a lot of searching on the Internet before finding OCF because there was little available locally. I always try to keep an eye out for my fellow Australian OCF members and look for new ones joining. I remember being instantly befriended by two other OCF Aussies. Now nearly four years later, I try to help and encourage others on the forum that are going through the same treatment I had.”

Brian Hill comments, “Sometimes only the voice and perspective of someone who has been there before can give you the answer that you need. No one gets through this battle alone. Most people initially come to the forum for information and to ask questions, but they stay on the forum because they develop relationships with one another. We have people that have been regular posters since the beginning a decade ago. Many express their gratitude of survivorship by helping others behind them on this path.”

Christine is one of those “regular posters” with over 2,700 posts. She said, “When I first came to OCF in June of 2007, I was scared and alone. The forum members reached out immediately and embraced me, assuring me that I would get through it and be okay. They quickly became my adopted cyber family, always encouraging me and keeping track of my progress. In fact, the post about my operation and 2-month hospital stay is the most-read post on the forum with over 78,800 views.” That number of views speaks to the huge audience of ‘lurkers’, those who read, but do not join in the discussions. Christine continues, “The forum is a wonderful place to get quick answers and opinions about questions concerning treatment, after-effects, medications, etc. The bonds of friendship that have been formed over the years will be with me forever. As a survivor, it is my duty to give back, to aid the weak when they are down. It’s kind of like holding someone’s hand when they are scared. I try to make a difference in someone’s life with every post I make.”

The forum allows people to stay in the comfort of their own home and access it 24 hours a day, to find both information and emotional support. By design, the forum allows caregivers and family members to participate as well in their own separate forums. Spouses often seek the advice of other spouses, asking questions they would hesitate to ask their partner, fearing those uncertainties would further add to the patient’s burden.

The forum does not operate in the format of a chat room, as those conversations are lost forever when they are finished. In OCF’s forum format, the knowledge is archived, and remains permanently for future access. More than 100,000 posts (even with monthly pruning of older, less informative posts) can be searched with key words, yielding a rich resource of the most common questions and thoughtful answers to them.

Rosie, a participant who lost her daughter to the disease, had this to say about the forum: “The OCF forum was an invaluable resource when my daughter Heather was battling squamous cell cancer on the base of her tongue. I often learned more from people on the forum than I did from the doctors. Someone was always there offering help within hours, or even minutes of my posting a question. And when Heather died, the OCF members came through once again. Danny Boy, who was relatively new to the forum and only came on board during the last weeks of Heather’s ordeal, started a memorial fund in Heather’s name. He made a generous donation himself, then rallied the troops and garnered a sizeable donation for OCF in memory of Heather. The bottom line is that the people on the OCF forum were my lifeline during the most horrendous 13 months of my life. Heather didn’t survive this horrible disease, but I still will be forever grateful to Brian Hill for creating the OCF website, and to all the OCF members on the forum that helped us through those dark months. I only wish we had found the site sooner. It may not have changed the outcome, but I feel that Heather would have had a better chance had I learned more before she started treatment.”

To ensure that accurate information is given out, and the appropriateness of postings is maintained, there are board monitors, drawn from the ranks of medical and dental professionals who volunteer on a daily basis to read the postings. Some like Dr. Jerry Wilke are even oral cancer survivors themselves. The foundation is very aware that the web, and its many sources of information and interaction can be a source of incorrect information that may cause harm. All postings are closely monitored for their content and appropriateness.

When Brian Hill planted the seed that would become the Oral Cancer Foundation nearly 12 years ago, he would never have dared to dream that it would become the world’s leading source of information and advocacy for the deadly disease. Brian concludes, “Because oral cancer often results in disfigurement or the inability speak clearly, many patients find their social lives taken away from them. Besides good information and support, I think a much overlooked aspect of the forum is that it helps give these people a social life, a community of caring people that become friends across great distances.” He added, “I urge anyone with oral cancer, or who is a friend or family member of one, to participate and tell others about our community. The battle against oral cancer is not only fought with drugs, radiation, and surgery; it is fought on the emotional field as well. I am always touched by the altruistic nature of those who populate our forums, and I can only aspire to the inner strengths that I see displayed by patients there every day. I am truly privileged to have this opportunity to interact with these amazing individuals.”

Many people battling cancer, or any illness for that matter, feel alone and tend to isolate themselves from those that are closest to them because they do not want to be a burden. That is one reason the OCF message boards have touched so many lives. Often members will refer to each other as their OCF family, even brothers and sisters. It’s a wonderful, safe place to come and share inspiration, hope, acceptance and even daily frustrations with one another. The forum and its members are the very definition of a symbiotic relationship: the forum owes its existence to its members, and its members in many cases owe their existence – and certainly their enhanced quality of life, to the forum.

About the Oral Cancer Foundation
The Oral Cancer Foundation is a non-profit 501(c) (3) public service charity that provides information, patient support, sponsorship of research, and advocacy related to this disease. It maintains a Web site at, which receives millions of hits per month. The Oral Cancer Foundation runs the Patient/Survivor forum. If you or someone you know could benefit from the message boards, please log onto

Recurrence of oral cancer found to signal poor outcome

Author: staff

How people fare when oral cancer recurs depends on where and when the cancer returns, a new study has found.

The research included 77 people in Australia who’d had oral squamous cell carcinoma, a cancer that occurs in the thin, flat cells that line the lips and mouth. The cancer was treated with surgery, radiation or both. However, the cancer came back, and they all subsequently had what’s called salvage surgery, which is a procedure to remove cancer after an initial treatment fails.

The researchers found that people whose cancer recurred at the same site as the initial cancer tended to do worse if the disease returned within six months, whereas those with recurrence at a different site did worse if their cancer came back after six months or more.

The overall five-year survival rate after salvage surgery was 50 percent. People who had initially had both surgery and radiation were 1.3 times as likely to die, the investigators found.

The median, or midpoint, in time to recurrence was 7.5 months after treatment, and 86 percent of the recurrences occurred within 24 months, the study found. Recurrence occurred at the initial site in 39 people, in the neck on the same side as their initial cancer in 27 people and in the neck on the opposite side in 11 people.

“Presumably, the poor outcome reflects a combination of more advanced disease at initial presentation, resistant tumor biology and limited salvage options,” wrote Michael D. Kernohan and his colleagues from the Royal Prince Alfred Hospital in Camperdown, Australia. “These findings suggest that patients whose disease fails maximal combination therapy have a low likelihood of successful salvage; we recommend that such patients be counseled accordingly.”

Source: December issue, Archives of Otolaryngology — Head & Neck Surgery.

December, 2010|Oral Cancer News|

Ann Layvey: outreach underpins academic fulfillment

Author: staff

Ann Layvey was raised to ‘give back,’ so it seems natural that her academic career at Penn Dental Medicine has been underpinned by community service.

“My mom always helped me to see the importance of outreach,” says Ann, who, from an early age, was involved in helping her community in New York by serving those in need. During her undergraduate experience, she volunteered at the New York University Hospital, and has consistently supported community service at Penn Dental Medicine, where it is also an integral part of the School’s curriculum. “By dealing with what concerns others, we define our own humanity,” she says.

Tapping into that ingrained altruism, Ann teamed with fellow students to help organize a new outreach program for the School that complimented their studies. In spring 2009, she co-coordinated Penn Dental Medicine’s first Oral Cancer Walk, garnering attention to oral cancer and over $16,000 in donations for the Oral Cancer Foundation. “We modeled this walk on the ones done in New York, Michigan, and Washington, D.C., and were thrilled beyond expectations for our first year,” she says. Nearly 300 participated in the walk, and 75 people came out for oral cancer screenings, effectively raising the community service profile of Penn Dental Medicine and building public awareness about how oral cancer screenings save lives. “This was our first year for this walk, and our goal is to keep it going,” she says.

In addition to helping the community in Philadelphia, Ann also put her skills to work in a more northern latitude. The summer after her third year, she traveled to a remote Inupiaq village in Barrow, Alaska as part of an externship program established by a Penn Dental Medicine alumna who directed a clinic for the Artic Slope Native Association in Barrow. “I expected to be challenged, but I also expected to apply my clinical experience to support these villagers,” she says. Ann spent two weeks in the village, during the season when the sun never sets, delivering preventive dentistry to children and providing oral hygiene education programs in schools. “Access to oral healthcare for rural Alaska Native people is a big medical concern,” she says. “It was rewarding to use my skills to make a difference there”.

The health promotion classes at Penn Dental Medicine have fueled humanitarian aspirations for Ann, who plans to work in a disadvantaged community for several years after graduation. “Not only has my academic experience prepared me professionally,” she says, “but it has also molded and shaped me for community service.”

December, 2010|Oral Cancer News|