Expert says Nivolumab Poised to Change Standard of Care in SCCHN

Source: www.onclive.com
Author: Laura Panjwani


Nivolumab (Opdivo) is a game-changing agent for the treatment of patients with squamous cell carcinoma of the head and neck (SCCHN), according to Robert L. Ferris, MD, PhD.

“Recent findings have shown us that this agent is really the new standard-of-care option for all platinum-refractory patients with head and neck cancer,” says Ferris, vice chair for Clinical Operations, associate director for Translational Research, and co-leader of the Cancer Immunology Program at the University of Pittsburgh Cancer Institute. “This is regardless of whether patients are PD-L1–positive or negative or whether they are HPV-positive or negative.”

The PD-L1 inhibitor received a priority review designation by the FDA in July 2016 based on the CheckMate-141 study, which demonstrated a median overall survival (OS) with nivolumab of 7.5 months compared with 5.1 months with investigator’s choice of therapy (HR, 0.70; 95% CI, 0.51-0.96; P = .0101) in patients with recurrent or metastatic SCCHN.

The objective response rate (ORR) was 13.3% with nivolumab and 5.8% for investigator’s choice. The FDA is scheduled to make a decision on the application for the PD-1 inhibitor by November 11, 2016, as part of the Prescription Drug User Fee Act.

Ferris was the lead author on an analysis that further evaluated preliminary data from CheckMate-141, which was presented at the 2016 ASCO Annual Meeting. In an interview with OncLive, he discusses the findings of this study, potential biomarkers for nivolumab, and questions that remain regarding the use of the immunotherapy in SCCHN.

OncLive: What were the updated findings from CheckMate-141 presented at ASCO?

Ferris: The data that were presented at the 2016 ASCO Annual Meeting were further evaluations and follow-up on some preliminary data—originally presented at the 2016 AACR Annual Meeting—that listed the OS results.

At ASCO, we recapped the primary endpoint of OS as an important endpoint for immunotherapies because response rate and progression-free survival may not be as accurate. Ultimately, the FDA and people at large want OS. In this study, OS was 36% at 1 year in the nivolumab-treated arm and 16.6% in the comparator arm, which was investigator’s choice of single-agent chemotherapy, consisting of methotrexate, docetaxel, or cetuximab. In this phase III randomized trial, nivolumab was given in a 2:1 randomization: 240 patients received nivolumab and 120 received investigator’s choice.

Also at ASCO, we presented further evaluations consisting of what the regimens are in the comparator arm. There was about 20% each of docetaxel and methotrexate and 12% of cetuximab. Approximately 60% of the patients had prior cetuximab exposure and we stratified by cetuximab as a prior therapy. We also demonstrated the ORR, which was 13.3% in the nivolumab-treated arm versus 5.8% in the investigator’s choice arm.

Therefore, there was an improvement in overall response, but the difference seemed more modest than the OS benefit—which was a doubling—with 20% more patients alive at 1 year. This reinforces the concept that perhaps response rate may not be the best endpoint. Progression-free survival (PFS) was double at 6 months, with about 20% in the nivolumab arm versus about 9.9% in the investigator’s choice arm. The median PFS was not different, but the 6-month PFS was twice as high. The time to response was about 2 months in each arm at the first assessment.

Your analysis also looked at biomarkers. Can you discuss these findings and their significance?

The p16 or HPV-positive group had a better hazard ratio for OS than the overall study population. The hazard ratio was .73 for the overall population, using a preplanned interim analysis. With the HPV-positive group, we had a hazard ratio of .55 and the HPV-negative group had a hazard ratio of .99. It is still favoring the nivolumab-treated patients but, with the curves separated earlier in the HPV-positive group, one could see the improvement with nivolumab at about 1 to 2 months. It took 7 or 8 months with the HPV-negative group to show a separation of the curves in favor of nivolumab.

We looked at PD-L1 levels, and PD-L1—using a 1% or above level—had an improvement in the PD-L1–positive patients in favor of nivolumab in terms of OS and ORR. When we looked at 5% and 10% thresholds of PD-L1, the OS did not seem to improve. Therefore, in all levels above 1%, the OS was similarly beneficial over the PD-L1 less-than-1% group. However, essentially all levels of PD-L1–positivity and PD-L1–negativity still favored nivolumab, but the benefit was more when its levels were greater than 1%.

We could combine HPV status with PD-L1 status and look at subsets; however, essentially every subset benefited, whether it was PD-L1–negative or positive. This indicates that, in this group of patients, who progress within 6 months of platinum-based therapy, that no current systemic therapeutic options benefit patients as well as nivolumab.

With regard to these findings, what are you most excited about?

Head and neck cancer is a difficult disease. Until recently, we didn’t know the impact of this enrichment for HPV-positive virus-induced subsets and we didn’t know if this was an immune responsive cancer. Clearly, it is. We have all of the hallmarks that we have seen for a bright future—based on the melanoma data—and a series of other cancers indicating response rates in the 15% to 20% range, suggesting that we now have a platform of the PD-1 pathway to combine with other checkpoints and to integrate earlier in disease with radiation and chemotherapy.

We have a demonstration of head and neck cancer as an immune-responsive cancer. We are beginning to get an idea of the biomarkers and starting to be able to segment patients who will benefit. Now, we have a large comparative trial with an OS endpoint and tissue to look at biomarkers to try and understand what the best future combinations will be.

What are some questions that you still hope to answer regarding nivolumab in head and neck cancer?

We have to get down deeper into the nonresponders. We should acknowledge that the majority of patients neither had a response nor benefited. Understanding who is more likely to benefit is useful, but we also need to understand the levels of alternative checkpoint receptors or other biomarkers of resistance.

We have sequential lymphocyte specimens from the peripheral blood, tissues, and serum so those are intensively under evaluation. There are interferon gamma signatures that have risen from the melanoma checkpoint field that will certainty be applied, as well.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

August, 2016|Oral Cancer News|

Rodeo Competitors Fight Smokeless Tobacco Use at Laramie Jubilee Days

Source: www.y95country.com
Author: Nick Learned

Cody Kiser and Carly Twisselman

Two professional rodeo contestants will ride exclusively for the Oral Cancer Foundation this weekend as part of Laramie Jubilee Days with a goal of preventing young fans from using smokeless tobacco.

Cody Kiser and Carly Twisselman each aim to show rodeo fans, particularly the younger ones, chewing or using other forms of smokeless tobacco isn’t what makes them who they are. They promote the Foundation’s campaign which uses the slogan “Be Smart. Don’t Start.”

Their approach is anything but confrontational or aggressive. Rather than encouraging people to quit, they hope to encourage young fans to never pick up the habit in the first place. And where some rely on statistics to make the point, Kiser and Twisselman take a different approach. Simply giving attention to young rodeo fans is a big part of getting their message across.

“Its not the facts that they’re going to take home,” Kiser says. “Everybody knows that tobacco’s bad; you can get cancer and you can die. But the biggest impact that I see is just acknowledging those kids or acknowledging those people in the audience that want to know more, and you can show them what you can do without tobacco.”

“I’m not out there to tell anybody how to live their life or preach to them about needing to quit,” Kiser says.

“It’s not our place to do that,” Twisselman says. “People most of the time aren’t going to listen when you tell them something like that anyway.”

The pair will be wearing Oral Cancer Foundation gear and handing out buttons, wristbands and bandanas bearing campaign messaging.

As they travel the rodeo circuit, Kiser and Twisselman each say they often see other riders use various types of smokeless tobacco such as chew and snuff.

“It’s very common,” says Kiser. “You see it everywhere.”

“One of my traveling partners, he started when he was in high school. He was just around it all the time,” says Kiser. “It was just the ‘cowboy’ thing to do, I guess.”

“A lot of people are very respectful about it,” Twisselman says. “They’ll see me in my shirt and be like ‘oh yeah, you represent the Oral Cancer Foundation’ and they’ll spit their chew out. I think that in itself is a positive side effect of it.”

“I think a large part of a lot of these cowboys is, it’s the cowboy thing to do, so they start doing it,” Kiser says. “And that’s where I want to step in and show the younger generation that you don’t have to chew to be a cowboy. You can be a cowboy athlete and not chew and treat your body as best you can, because what we do is very difficult and it’s hard on the body.”

“A lot of folks started when they young,” Kiser says. “And I’ve talked to guys who started chewing later in life and they can’t quit, or it’s hard for them. It’s a vicious thing.”

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

Rodeo outreach program fights oral cancer

Source: www.olivesoftware.com
Author: Stewart M. Green


Carly Twisselman, a spokesperson with the Oral Cancer Foundation’s rodeo outreach program, and her horse Chanel travel the Western rodeo circuit and talk with kids about the dangers of using spit tobacco. Photo by Stewart M. Green

Carly Twisselman brushed her horse Chanel outside a stall at the Norris-Penrose Event Center, home of the Pikes Peak or Bust Rodeo, which will roll into town July 13-16. “I’ve been rodeoing my whole life,” she said. “Now I do it at the professional level. This is my rookie year so I’m going really hard. I want to win the rookie title.”

Summer is the busiest time of the year for cowgirls and cowboys. “We call it Cowboy Christmas, the 4th of July run,” she said. Twisselman and her travel partner have recently competed in Utah, Nevada, Arizona, New Mexico, and just drove up from Pecos, Texas, to Colorado Springs for qualifiers. “It’s a crazy time,” she said. “Lots of traveling, but lots of money to be won.”

Twisselman, a 30-year-old barrel racer, grew up on a ranch near San Luis Obispo on the central California coast. “My family’s been ranching there for seven generations,” she said. “I was on the back of a horse all the time. I was riding before I could walk.”

While growing up in the Western ranching and rodeo culture, Twisselman was aware of the widespread use of spit tobacco by cowboys. “I’ve been around it my whole life and seen a lot of things that were negative and I was affected by it.”

Rodeo and tobacco have a long history together. Starting in 1986, the U.S. Smokeless Tobacco Company sponsored the Professional Rodeo Cowboys Association until the association ended its partnership with tobacco advertisers in 2009. Tobacco use, however, still thrives with cowboys and spectators at rodeos.

In 2014, the Oral Cancer Foundation, a nonprofit organization that supports prevention, education and research of oral cancer, reached out to pro rodeo athletes to spread the word about the dangers of tobacco use, with Cody Kiser, a bareback bronc rider, as their first rodeo spokesperson. This past year they added Carly Twisselman to continue creating awareness in the rodeo community.

“Honestly, it was God that they came to me,” said Twisselman. “Their goal was to reach rodeo people, people in the Western culture and people that were horse lovers because tobacco is a huge problem in rodeo.” The foundation asked Twisselman to be a spokesperson and she gladly accepted. “It’s an amazing thing to represent such a great organization. I can take this rodeo platform where I’m in front of thousands of people and use it for good.” While the Oral Cancer Foundation wants to help adults with tobacco problems, its rodeo focus is on children. According to The Centers for Disease Control and Prevention, 9.9 percent of high school-age boys use spit tobacco nationwide, while 10.5 percent of men ages 18-25 use it. Usage is higher in rural states like Wyoming, Montana and West Virginia. A can of spit tobacco packs as much nicotine as 40 cigarettes, and a 30-minute chew is like smoking three cigarettes, making addiction to spit tobacco one of the hardest to break. Spit tobacco, including smokeless tobacco, dip, snuff, chew and chewing tobacco, can cause gum disease, tooth decay and oral cancer. Almost 50,000 people will be diagnosed with oral cancer in 2016.

“We aren’t telling people they should stop,” Twisselman said, “but we show people why it’s not good to use tobacco. If someone is chewing, I’m not going to go lecture them.”

Twisselman and Kiser focus on helping kids make positive choices about tobacco use. “Kids look up to us as idols and if they see us doing good and not chewing tobacco then maybe they won’t either,” Twisselman said. “Our message is: ‘Be Smart, Don’t Start.’”

Twisselman also attends junior rodeos where she hands out wristbands, bandanas, pins, and buttons. “Kids love the freebies,” she said. She also wears Oral Cancer Foundation logos on her competition shirts.

Surprisingly, some rodeo women chew tobacco. “It’s not the problem it is with the men,” Twisselman said, “but I do see it. I find it really repulsive. Sometimes women who chew will see me and say, “Oh, you work with oral cancer” and they’ll take their chew out and throw it away because they don’t want to be disrespectful to me.”

Twisselman said she and Kiser are making a difference, noting people are becoming more educated about the dangers of throat cancer from chewing tobacco and learning that it’s not a healthy habit. “We’ve only been doing this for a year now and we’re still getting our feet wet,” she said. “It’s hard to know if fewer kids are chewing now but I’m getting the word out and interacting with them. Because we take the time to talk with kids and give them the little gifts, it has a huge impact on them.”

To learn more about oral cancer and its prevention, medical research, education and for patient support, then visit oralcancer.org.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

Aspen Dental Practices Donate More Than $20,000 To The Oral Cancer Foundation For Oral Cancer Awareness Month

Source: www.pharmiweb.com.org
Author: Aspen Dental

SYRACUSE, N.Y., May 31, 2016 /PRNewswire/ — Aspen Dental–branded practices will donate $22,375 to The Oral Cancer Foundation (OCF) as part of a program that contributed $5 for each ViziLite® oral cancer screening conducted during April for Oral Cancer Awareness Month. In total, more than 4,000 patients were screened across more than 550 practices in 33 states.

Since 2010, Aspen Dental-branded practices have donated more than $105,000 to OCF.

“Approximately 48,250 people in the U.S. will be diagnosed with an oral or oropharyngeal cancer this year; and of those only about 57% will be alive in five years,” said Natalie Riggs, Director of Special Projects for The Oral Cancer Foundation. In 2016 we estimate that 9500 individuals will lose their lives to oral cancers and we are grateful for the support from Aspen Dental practices in helping us raise awareness and aiding in our efforts to fight this disease.”

Oral cancer is frequently preceded by visible pre-malignant lesions and can be diagnosed at a much earlier stage (I or II) with ViziLite® Plus, a specially designed light technology.  When caught early and treated, the survival rate is 80 to 90 percent.

“We’re working to educate our patients about the risk factors, warning signs and symptoms associated with oral cancer so that we can help them catch the disease before it progresses,” said Dr. Murali Lakireddy, a general dentist who owns Aspen Dental offices in Ohio. “Many of our patients do not think about oral cancer when they go to the dentist, but in fact, oral cancer screenings are just as much a part of your routine dental visit as a deep clean from the hygienist.”

To learn more about oral cancer screenings, visit the OFC website at http://www.oralcancerfoundation.org/dental/how_do_you_know.html.

About Aspen Dental Practices
Dentists and staff at Aspen Dental practices believe everyone has the right to quality, affordable oral health care. As one of the largest and fastest-growing networks of independent dental care providers in the U.S., local Aspen Dental practices – more than 550 of them across 33 states – offer patients a safe, welcoming and judgment-free environment to address their dental challenges. Every Aspen Dental-branded practice offers a full range of dental and denture services – including comprehensive exams, cleanings, extractions, fillings, periodontal treatment, whitening, oral surgery, crown and bridge work – allowing patients to have the peace of mind that they are taken care of and protected, so they can focus on getting the healthy mouth they deserve. In 2015, Aspen Dental-branded practices recorded more than 3.7 million patient visits and welcomed nearly 785,000 new patients.

Rodeo rider raising awareness of chewing tobacco and oral cancer

Source: www.krcrtv.com
Author: Danielle Radin



REDDING, Calif. – The Redding Rodeo kicked off Wednesday night with events like barrel racing, cattle roping and mutton busting.

Professional barrel racer, Carly Twisselman said chewing tobacco is prominent at rodeos. She’s teamed up with the Oral Cancer Foundation to try to change that.

“We want to show children that you can follow your dreams, be who you want to be, pursue being a rodeo athlete and not chew tobacco,” said Twisselman.

Twisselman competes in rodeos across the country and sees chewing tobacco time and time again.

She’s teaching children chewing tobacco is not the ‘cool thing to do.’ She also wears letting on her sleeves every race that reads, “Be smart, don’t start.”

She also has a brother who chews and had a health scare from it.

“My brother’s had signs of cancer of the mouth from chewing,” said Twisselman. ”  “I just think that’s the wrong message we should be sending to this children.”

According to the oral cancer foundation, there will be about 48,000 new cases of oral cancer in 2016 in the United States. 75 percent of all oral cancer patients use tobacco.

They estimate nearly 10,000 people in the United States will die from oral cancer in 2016.


Cowboy raises awareness for oral cancer

Source: www.kristv.com
Author: Annie Sabo
KRISTV cody interview

In an environment where smokeless and spit tobacco is prevalent, cowboy, Cody Kiser, says he feels like the luckiest guy in the world to represent the Oral Cancer Foundation.

He told us, “I just happened to be in a class with a classmate. Their sister works for the oral cancer foundation…one thing led to another and they said  we’ve been looking for a cowboy that doesn’t smoke or chew and we’d love to be able to work out some kind of deal where we help you out you help us out…now I’m here.”
Although Cody has not been personally affected by the cancer, he wears a special patch on his shirt to raise awareness for the deadly disease.

He said, “I’m very lucky that I haven’t had any family members or friends be affected by oral cancer. I’ve made friends with people that have been now and it’s a real eye opener.”

Since partnering with the oral cancer foundation, he works hard to promote this message: “Be smart don’t start…we want to get out to the kids and fans who haven’t smoking or chewing yet.”

Cody says the best part about working for the oral cancer foundation is serving as a role model for children. He told us, “You can be an elite athlete and an amazing cowboy without having to smoke or chew. That’s our goal is to get to those kids before they do that. I just want to be a good role model for these kids.”

Rodeo after Rodeo, Kiser hopes to make a difference.

10334178_GKiser wears this patch every time he competes.


View Cody Kiser’s full inter view here: http://www.kristv.com/clip/12364598/rodeo-cowboy-has-a-special-message-at-buc-days

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

The Oral Cancer Foundation’s Founder, Brian R. Hill, honored by the Global Oral Cancer Forum – International oral cancer community honor his accomplishments in the field.

Source: www.prnewswire.com
Author: The Oral Cancer Foundation

Bryan R. Hill receiving the award at the Global Oral Cancer Forum. (PRNewsFoto/Oral Cancer Foundation)

NEWPORT BEACH, Calif., March 10, 2016 /PRNewswire-USNewswire/ — At the recent Global Oral Cancer Forum (GOCF), Brian R. Hill, Executive Director and Founder of the Oral Cancer Foundation (OCF), was honored for his work as an advocate and innovative thinker in the oral cancer arena. The GOCF organizers and community awarded Hill the 2016 Global Oral Cancer Forum Commitment, Courage and Innovation Leadership Award for his dedication and contributions to the field of oral cancer over the last 18 years. Upon accepting the award, Hill received a standing ovation from those in attendance, which included global oral cancer thought leaders, researchers, treatment physicians, other non-profit organizations and representatives from various government agencies, including the National Institutes of Health / National Cancer Institute, and the World Health Organization (WHO).

When asked about being honored Hill said, “In the beginning and for many years I was alone at OCF and it was just the seed of an idea. Those grassroots efforts matured into a robust network of important relationships with a common goal. Today OCF is so much more than just me and my singular efforts. Through the benevolence of the many OCF supporters, particularly in the RDH, dental/medical professional communities and survivor groups, OCF has grown into a powerful national force for proactive change of the late discovery paradigm, access to quality information, disease and patient advocacy, funding of research, and patient support.” Hill acknowledges that he had the mentorship of some of the brightest minds of the non-profit world to build his understanding of appropriate governorship of an entity such as OCF, as well as support from core researchers and treatment professionals in the oral cancer arena. “To paraphrase someone far more famous, if I was able to see farther than others had going before me, it was because I stood on the shoulders of many highly accomplished others who helped me achieve my goals,” says Hill.

Hill, a stage four oral cancer survivor, became a student of the disease after his own diagnosis left him looking for answers. Since founding OCF and overseeing the path and initiatives of the foundation for more than a decade and a half, Hill often finds the advocacy role suits him well. He has championed anti-tobacco legislation within the political system, and is an advocate at various government entities such as the CDC regarding vaccination of boys against the virus known to be the primary cause of most oropharyngeal cancers.  He also sits on two National Institutes of Health (NIH) oversight committees—one at the National Cancer Institute (NCI), which oversees clinical trials in immunotherapies in head and neck cancers, the other at the National Institute of Dental and Craniofacial Research (NIDCR) reviewing trials looking at long-term outcomes and complications of treatment in head and neck cancers. In addition, Hill still one-on-one counsels patients, participates in OCF’s online Patient Support Forum, and is often the voice for a community that has lost its own, through many diverse media interviews and lectures.

While OCF has received many awards for its advocacy work and contributions to the battle against oral cancer, including recognition from the NIH/NIDCR, WHO, Great Non-Profits, various universities and professional medical and dental societies, and even Internet guru Mashable.com for innovations in applying technology to serve its health oriented goals, receiving recognition from this forums organizers and some of the  leading authorities on oral cancer in the international community is particularly meaningful. Those in attendance are recognized as experts in the field and understand the challenges and importance of the work OCF has undertaken. Sponsored by the Henry Schein Cares Foundation, the benevolent arm of the powerful Henry Schein Inc., known for its long-term commitment to improve issues related to oral care, The Global Oral Cancer Forum’s vision is to build partnerships that will promote the changes required for a substantial impact on the incidence, morbidity, and mortality of oral cancer worldwide. The importance of the Schein organization’s leadership in creating this venue cannot be overstated.

Top oral cancer experts and advocates from around the world, representing countries as far away as Japan, China, and India as well as from the Americas, convened over the weekend to attend the inaugural forum. Attendees included clinicians, scientists, epidemiologists, activists, public health experts, as well as OCF Directors and other NPO organization heads who are working hard to find impactful avenues to reduce the global oral cancer burden. Attendees met to exchange ideas and learn from one another about what is and isn’t working in the global realm of this disease. Delegates from thirty-three countries presented new research findings and discussed their unique challenges and approaches to understanding and addressing one of the leading burdens of the cancer world.

Globally, the incidence rate for oral cancer is growing and has reached what many experts are calling epidemic proportions. This year approximately half a million patients will be newly diagnosed with an oral or oropharyngeal cancer. Among the topics discussed by GOCF panelists were the rise in disease incidence and the regional disparities and factors affecting global populations. Communities throughout much of South East Asia report a high percentage of the population chewing betel and areca nut, a significant risk factor for the development of oral cancer. Meanwhile in the U.S. and other developed countries the prevalence of the HPV virus is the leading contributor to the rising rates of oropharyngeal cancers. Identifying these differences is vital to the development of effective prevention, public policy, and treatment strategies. Advancement of a universal understanding of what the problems are and what initiatives are working around the globe, reveals commonalities, and within them the group will find its beginning joint efforts to effect change.

Looking forward there is clearly much work to be done. The good news is that there are significant strides being made in research and treatment; but balancing those positives, there are also significant shortcomings in current governmental policies, prevention, and public awareness and understanding. Hill said, “While I and OCF are very proud to have been chosen by the organizers, and the global oral cancer community to receive this award, it only serves to motivate us to strive to accomplish more. We have built relationships here that will translate into new avenues of endeavor for OCF in the future.” Jamie O’Day, OCF’s Director of Operations, also attended the conference and spent her time networking with her counterparts from around the world. Many new ideas were garnered from these discussions that will be applied in future OCF initiatives and support OCF’s mission to reduce the suffering caused by this disease both nationally and globally.

About the Oral Cancer Foundation:
The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides vetted information, patient support, sponsorship of research, as well as disease and risk factor reduction advocacy related to oral cancer. Oral cancer is the largest group of those cancers that fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, tonsil cancer, head and neck cancer, and throat cancer. The Oral Cancer Foundation maintains the websites: www.oralcancer.org , www.oralcancernews.org , www.oralcancersupport.org , which receive millions of hits per month. Supporting the foundation’s goals is a scientific advisory board composed of leading cancer authorities from varied medical and dental specialties, and from prominent educational, treatment, and research institutions in the United States. The foundation also manages the Bruce Paltrow Oral Cancer Fund, a collaboration between the Paltrow family represented by Ms. Blythe Danner (Paltrow), Gwyneth Paltrow, Jake Paltrow and the Oral Cancer Foundation.

Media Contact: Jamie O’Day / The Oral Cancer Foundation (949) 723-4400 jamie@oralcancerfoundation.org

Rodeo Insider: Cowboy takes it on himself to ride home a message

Source: www.star-telegram.com
Author: Brett Hoffman
0125 rodeoBronc rider Cody Kiser is trying to encourage cowboys to abstain from tobacco. Richard W. Rodriguez Star-Telegram


In a day when rodeo riders are approaching the sport from an athletic standpoint more than ever, there’s a heavier emphasis on physical fitness and many competitors are taking a closer look at abstaining from substances such as alcohol and tobacco.

One cowboy attempting to send a message about abstaining from frequent tobacco consumption is bareback bronc rider Cody Kiser.

“A lot of these cowboys don’t smoke or chew, and if they do, it’s really rare,” Kiser said. “A lot of the guys consider themselves as athletes. So they want to keep their bodies at an optimum performance and they don’t want to do anything that would break them down.”

When the Fort Worth Stock Show conducted the opening performance of its 16-day Professional Rodeo Cowboys Association show on Friday, Kiser turned in a bareback score of 80, the highest marking of the night.

As he competed in the renowned rodeo, Kiser wore a patch on his shirt that said: “Oral Cancer Foundation.”

The foundation’s website lists Kiser and a spokesman and states: “The western/rodeo environment has had a long-term relationship with tobacco, and until 2009 the PRCA had a lengthy history of tobacco sponsorship money. While that has ended, tobacco use, and smokeless/spit tobaccos still thrive in the sport. While adults have the right to make any lifestyle choice, they inadvertently expose impressionable young people to what are sometimes harmful habits though poor examples like the use of tobacco products. This is particularly harmful as kids look up to athletes.”

Kiser, 25, who is from Carson City, Nev., aspires to set a great example.

“My message is for the younger generation, to expand the sport of rodeo and help it become more mainstream,” he said. “Rodeo can be like NASCAR. When NASCAR started getting rid of most of their alcohol and tobacco sponsors and then started bringing in sponsors such as Tide and Kellogg, which are more family oriented, then the sport exploded. Today, there’s so much more money in NASCAR and it can become the same for rodeo.”

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

Patient Support in Oral Cancer: From Sydney to New York to London, survivors and patients interact through an important portal to get through difficult times

Source: www.prnewswire.com
Author: Press Release

NEWPORT BEACH, Calif., Sept. 28, 2015 — The word “cancer” will incite fear in anyone. When that word comes at the end of a sentence that began with your name, the impact can be life changing. “I had a great job, a beautiful house and a happy family life,” recalls oral cancer survivor and Oral Cancer Foundation (OCF) Director of Patient Support Services, Christine Brader. “All that changed once I got sick.” Those affected by oral cancer, like Christine, are saddled not only with the physical challenges of treating and surviving the disease, but they must also live with the emotional uncertainty and anxiety that accompanies a diagnosis. OCF’s Patient Support Forum (oralcancersupport.org) was created specifically to provide patients with the information, guidance, and support they need to face a cancer diagnosis. Now in its 15th year, it has helped tens of thousands navigate a difficult path.

It was nearly 16 years ago that oral cancer survivor and OCF founder Brian Hill began his search for answers. “When I was first diagnosed,” Hill recalls, “I was scrambling for the right information. Once inside the treatment world I was faced with decisions about which treatment path was right for me, uncertainties of what would lay ahead, the arrival of complications unexpected, pain, and ultimately a sense of the loss of control and a resulting fear.” While hospital support groups and some online chat rooms existed at the time, they fell short of providing the insights, guidance and accessibility necessary to have real benefit to a newly diagnosed cancer patient undergoing treatment. “My problems were complex and changing daily. Every day it seemed that something new was occurring that complicated matters, and I needed to talk with someone who could help me digest everything from the new medical terminology, to dealing with side effects of what I was undergoing.” It was through building relationships with other survivors and exchanging stories and information that Hill was able regain hope and envision life after cancer.

In 2001, seeing a need for patients to connect with one another, Hill worked to develop an interactive online forum where patients and survivors could share their knowledge and tell their stories. Christine Brader joined the forum after her first oral cancer diagnosis in 2007. “When I was diagnosed I didn’t know which way to turn, and by finding others who had gone through it, I gained significant peace of mind,” she recalls. “After my third cancer recurrence, I lost 65 pounds, was hospitalized twice for dehydration and malnutrition and was ready to quit. The doctors don’t always prepare patients for the realities of the difficult treatments.” It was the advice from other survivors, words of encouragement and support from the OCF forum community that convinced Christine to continue her treatments and gave her hope. “There’s a whole world of people who have gotten through it and survived, they are living in a world after cancer and are thriving” she says. “Given the extensive disfiguring surgeries, and compromises that I would be forced to live with, I was uncertain if there was even a place for me in the world after fighting to survive. Single, unable to work in my previous vocation, I could not wrap my mind around how I would fit back into a world where everything from esthetics, to the ability to speak clearly carry so much weight. But through this online vehicle, I built friendships, and through one person in particular I was repeatedly told that there can be a rich vibrant life after this terrible cancer, which can leave its visible damage even after survival, no matter how different I was after it all. The transition was not easy, but they were right. Life after my battle is rich in relationships, and meaningful work.” Now, as the patient support administrator for OCF, Christine offers her experience-based insights and emotional support to others just beginning their own battles.

Unlike public chat rooms and social media based groups, OCF’s Patient Support Forum was designed with the users’ privacy and safety in mind. OCF’s forum users’ personal information will never be marketed to by outside companies, and they will never be exposed to advertising; both considerations associated with social media platforms. Anonymous screen names protect privacy and facilitate an open dialogue for difficult topics such as intimacy and depression. “It was important to develop rules to ensure that the information on the forum is reputable, and accurate. Misinformation can facilitate poor decision making, and harm people,” says Hill. To that end, the forum is heavily monitored by volunteer staff with diverse medical backgrounds including dentistry, oncology, research, and nursing and of course long term survivors themselves. Both Hill and Brader agree that the survivors are often the most adept at answering questions correctly and sensitively. “Survivors direct experience many times trumps clinical experience of professionals, though we would never suggest that they have the same level of knowledge. But living on the receiving end of the treatment process definitely provides you with a much different perspective. We don’t let inaccurate information live on our boards,” says Hill, “and we will correct or eliminate the information/comments that are incorrect or scientifically unsupported.”

It is this kind of monitoring and oversight that earned OCF’s websites, oralcancer.org and oralcancersupport.org, Health on the Net’s HONcode certification. The HONcode is a designation reserved for online publishers of trustworthy and reliable medical and health information who have volunteered to adhere to hundreds of strict guidelines and Health on the Net’s code of ethics. This certification is an oversight process that is ongoing, to ensure the consumer that information presented is trustworthy and scientifically accurate; and that protocols for proper informed interaction are in place. With the understanding that poor information can lead to poor choices, OCF has gone to great lengths to protect its members from misleading information.

Today, the Oral Cancer Foundation is working hard to make patients and their families aware that support and answers are available online, for free, 24 hours a day by visiting the web based forum. In keeping with OCF’s missions to reduce suffering and save lives through prevention, education, research, advocacy, and patient support, the forum has been designed to fulfill the need for reliable medical information and emotional support. With over 10,000 active members, thousands more who visit the site, read the threads of discussion without becoming members or posting themselves, and over a quarter million archived threads of information, the forum has grown into the largest and most well curated databases of oral cancer information and emotional support on the internet. Members now span across the globe and dozens of countries. Even oncology researchers have looked to this online community to develop answers and insights into understanding the patient experience, and improving the ways in which they interact with patients, and anticipate their needs both physical and emotional.

When discussing the relationships he’s made on the forum, Ed Brown, now a 12-year oral cancer survivor says, “Finding each other is the greatest thing that has ever happened to us. When you feel like you’re some kind of freak and struggling alone with your issues, it’s the best feeling to find out there is someone else out there who has dealt with the same thing, someone who knows what it’s like, someone who understands the “work-arounds” for some of the complications of treatments that we all deal with. Thanks to the forum I now know 10,000 survivors who because of our shared experiences are a resource I can turn to.”  Few people can comprehend the pain and hardship of undergoing treatment for a life threatening illness, fewer are aware of the emotional isolation and lonesomeness that accompanies the disease. Only survivors, other patients, and their caregivers live the intimate struggles and battles of will that take place when fighting for your life.

“The support forum became a second family really, not just a bunch of patients or survivors, but a community that I was a part of. We’ve all shared a common experience, endured treatment, survival, complications, and funerals. The camaraderie in the community is the heart and soul of what OCF really is – a group of people helping other people,” says Hill. The individuals who use the support forum have made lifelong friendships and passed along their experiences and knowledge to others.  Brown says, “For every success I’ve had on this journey, likely a thousand people will have known about it.” Sharing in the successes of others and giving back to a community that has embraced you during your difficult times are important reasons why many of the thousands of forum users continue to use the site after they’ve been declared “disease free.”

Hill has called the patient support forum the “heart and soul” of the foundation. Given the foundations many diverse activities; from sponsoring research to advocacy, those that populate the OCF forum, who choose to spend part of their new lives in service to those behind them on the path, he feels they are the palpable core of what OCF is. Few face-to-face support groups can deal with the daily needs of patient ups and downs, as they most often meet once a month, and have less depth of experience to draw from as there are fewer individuals to share their experiences, and fewer survivors attending as they move on from their cancer experience. The OCF forum idea, created well before Google was the major search engine we know today, and before any social media companies like Facebook even existed, has a decade and a half of experience as an Internet based platform to help others… as often as they find a need for it.

Oral cancer is not fought with treatment staff and medicine alone, but in conjunction with reliable medical information to facilitate good decision making, and emotional support and guidance when the questions and weight of the experience seem overwhelming. OCF’s Patient Support Forum is a resource rich with answers, accessible anytime, from nearly anywhere, anonymous, monitored and safe, and free to anyone in need.

For more information about the Oral Cancer Foundation and the Patient Support Forum, please visit oralcancer.org and oralcancersupport.org.

About the Oral Cancer Foundation:
The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides information, patient support, sponsorship of research, and advocacy related to oral cancer. Oral cancer is the largest group of those cancers that fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, head and neck cancer, and throat cancer. The Oral Cancer Foundation maintains the web sites: www.oralcancer.org, www.oralcancernews.org, www.donate.oralcancer.org, www.oralcancersupport.org and www.ocfstore.org, which receive millions of hits per month. Supporting the foundation’s goals is a scientific advisory board composed of leading cancer authorities from varied medical and dental specialties, and from prominent educational, treatment, and research institutions in the United States. The foundation also manages the Bruce Paltrow Oral Cancer Fund, a collaboration between the Paltrow family represented by Ms. Blythe Danner (Paltrow), Gwyneth Paltrow, Jake Paltrow and the Oral Cancer Foundation.