HNCA News Bulletin

December 2018

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Oral, Head and Neck Cancer Awareness Week® 2019 is scheduled for April 7-14.

Visiting China: A Glimpse into Life as a Chinese Laryngectomee

By: HNCA Board Member, Itzhak Brook, MD, MSc

Sometimes we take our own experience for granted and forget that things may not be the same in other parts of the world. I was honored to be able to visit China and get first-hand insight into the life of Chinese laryngectomees and head and neck cancer patients.

My visit allowed me to become familiar with the life and challenges facing laryngectomees and other head and neck cancer patients in China. The laryngectomees cover their stoma with a locally made ornament that does not possess any filtering capability. The main method of non-laryngeal speech in China is esophageal speech. The laryngectomees I met speak fluently using this method. Electrolarynx use is uncommon in China and tracheoesophageal speech has not yet been introduced to the country.

Laryngectomees in China face challenges similar to those commonly seen in other countries. They are often discriminated against in their workplaces, deal with depression, and experience isolation. However, the Chinese traditions of respect for the elderly and infirm and strong family ties are of great help. . .

OHANCAW® Registration is Now Open

Early Registration has begun for Oral, Head & Neck Cancer Awareness Week®. If your hospital, medical clinic, dental clinic, or community health fair will be offering an oral, head and neck cancer screening in 2019, register your event now! It’s easy and simple to register with HNCA.  Then, you organize the volunteers and staff, and we provide all the promotional and educational materials free of charge! Screening kits containing these materials, as well as volunteer t-shirts, posters, and giveaways begin shipping in mid-March.

Did You Know?  The Commission on Cancer has indicated that hosting an OHANCAW® screening will help during its accreditation process, as an OHANCAW® screening serves as a community event.

HPV Vaccine Now Approved for Use in Adults Ages 27-45

The HPV vaccine, Gardasil 9, was recently approved by the FDA for use in individuals ages 27-45 years old, offering its cancer prevention power to more people than ever! 

While HPV is a very common sexually transmitted infection and almost every sexually active adult will acquire at least one strain during their lifetime, the expanded use of the vaccine will still offer some level of protection. For adults, the vaccine will protect against strains of the virus to which they have not yet been exposed, thereby reducing the number of strains of virus that could go on to cause cancer or other health complications.

However, as of this writing, the Advisory Committee on Immunization Practices (ACIP) has yet to make a formal recommendation for vaccination in this age group. Until the vaccine is officially added to the ACIP’s adult immunization schedule, vaccination with Gardasil 9, while allowed by the FDA, is not likely to be covered by insurance.

MOUTH (Men Offering Understanding of Throat HPV) Study 

Johns Hopkins researchers are seeking male volunteers, ages 35-79, who have performed oral sex on more than two partners in their lifetime, women and/or partners of women with cervical dysplasia or ICC or partners of HPV-positive head and neck cancer patients. This study will help researchers understand markers for oral HPV infection and may help to develop better screening for oropharyngeal cancer. You will complete a survey and provide an oral rinse, blood, saliva and urine samples. 

Principal Investigator: Dr. Gypsyamber D’Souza

JH SOM eIRB#: IRB00119537

The First North American HPV Awareness Week Takes Place January 22-28, 2019

Members of American Medical Women’s Association (AMWA), the United Nations, the Global Initiative Against HPV & Cervical Cancer, the American Head & Neck Society (AHNS), The American Cancer Society, and the World Health Organization have collaborated to present the first North American HPV Awareness Week, January 22-28, 2019. The goal of the initiative is to increase public and practitioner awareness of HPV, HPV-related diseases, and the importance of HPV vaccination.

Each day of the week will focus on a different HPV-related topic, with Thursday, January 24 being dedicated to oropharyngeal cancer awareness. HNCA will be sharing HPV Awareness Week resources during this inaugural event, including information on the Us vs. HPV webinar series. 

Portraits of Survivorship

My name is Paul Reitano. I am a photographer, a head and neck cancer survivor (almost 6 years out!), and an HNCA AmbassadorI am seeking fellow head and neck cancer survivors who would like to be part of an ongoing portrait project I’m developing, both as a solo artist and in conjunction with the Head and Neck Cancer Alliance.

The goal of the project is to document and celebrate head and neck cancer survivorship, with portraits featured in gallery shows, HNCA-related projects, and in my personal portfolio. Participants in the portrait project will receive free digital images via a custom gallery, link, prints, and unlimited right to all images selected.

My show, THRIVE: The Overcome Project, was on exhibit during November 2018 at the Vermont Center for Photography and focuses on my personal cancer journey on the road to recovery. Going forward, I would like to focus on others who have traveled the same road. You can see more of my work here.

If you are interested in having your professional portrait taken and used to inspire others on similar journeys, please contact me. This is a long-term project, and I will shoot on location at a time and place that works for you; I do not expect anyone to come to me! I am based in New England, but make frequent trips to the Mid Atlantic region. Let’s work together to inspire others and show them there is life after cancer. Thank you for your consideration.

Ready.Raise.Rise

From June to September 2018, HNCA participated in the Ready. Raise. Rise. Pic Your Power challenge. We asked you to visit DiscoverIO on Facebook and share a photo showing how you harness your unique inner power to rise up against cancer. Bristol-Myers Squibb pledged to donate $250,000 to be split evenly across participating cancer advocacy groups, like HNCA, if we could upload 100 images. And we did it! Thank you to everyone who participated in the challenge. Together, we met the goal and helped provide donations to patient advocacy organizations, including HNCA.

HNCA's Cookbook, Healing & Easy Eats, is Now Available Online

October was National Cookbook Month, and to celebrate, Head and Neck Cancer Alliance published weekly chapters from our 2nd edition cookbook, Healing and Easy Eats, to the HNCA websiteHealing and Easy Eats is addressed to anybody who is affected by cancer of the head, neck, tongue, throat or anyone undergoing surgery, chemotherapy, and/or radiation therapy. Proper nutrition is one of the most important parts of your recovery. Your battered body will need high-calorie foods, but your ability to eat, drink, and swallow will be very limited. Therefore you will need a special menu that will enable you to get the right amount of calories and avoid unhealthy weight loss during your treatment. The Head and Neck Cancer Alliance wishes you the best of luck on your recovery and hopes that this book can help you along your journey.

Healing & Easy Eats is dedicated to the memory of Chef George Chajewski, whose First Edition cookbook, Your New Best Friend, the Blender: Cooking for the Cancer Patient, is the basis of this edition. HNCA extends special thanks to head and neck cancer survivors Lisa Reed and Ryan Gainor, whose home-created recipes round out this latest version of the cookbook.

How to Find Your Hope

Steve Chadwell may not be a poker player, but he knows a bad hand when he’s holding one.  Over the past seven years, Chadwell has suffered a career-ending back injury, a freak compound fracture, and cancer that came from out of nowhere to crush his spirits yet again. Any of the ailments and some of the resulting treatments could have easily killed him. But despite his streak of misfortune, Chadwell refused to stop fighting, and won’t back down in the face of future adversity. In fact, at age 62, he’s placing his biggest bet yet: on hope. Read Steve’s story and the role that the right nutrition played in his recovery.

Reposted courtesy of Kate Farms.

Recipe Contest

To submit your favorite family recipe for head and neck cancer patients and survivors, please send to info@headandneck.org or fill out the online form. When submitting, please be sure to include the following:

  • Name of homemade Recipes
  • Individual's first and last name along with City, State of Current Residence
  • Photo of your completed dish/beverage from your recipe
  • Permission of usage for the Head and Neck Cancer Alliance to utilize recipe as necessary
  • Optional: Why you believe your home-created recipe is Award-Winning and benefits the head and neck cancer patient and survivors?

Please note that we will accept recipes from anywhere in the world, however, only U.S. participants are eligible to win a Vitamix Blender.  

Recipes will be evaluated and 3 winners will be chosen to receive a free Vitamix® blender. Drawings are scheduled to be quarterly, but exact timing depends on the number of recipe submissions received.  Winners will be announced in our newsletter and on the website, and winners will be individually notified by email.

Recipe Card 11: Lobster Bisque

Serving Size: 6

Ingredients:
  • ½ lb lobster or meat, minced*
  • 2 tbsp oil
  • 2 tbsp minced shallot
  • 2 tbsp chopped green onion
  • 3 garlic cloves minced
  • ¼ c white wine
  • 2 tsp worcestershire sauce
  • Dash of Tabasco
  • 1 tsp dried thyme
  • 6 tbsp dry sherry
  • 1 tsp paprika
  • 1 c hot water
  • 1 tsp lobster base (better than bullion)*
  • 4 oz tomato paste
  • 2 bay leaves
  • 2 c heavy whipping cream
  • 4 tbsp butter
Cooking Steps:
  1. Heat the oil over medium high heat and sauté the shallots, green onion and garlic for 1 minute.
  2. Deglaze the pan with the white wine.
  3. Add the Worcestershire, tabasco and thyme and sauté for 1 minute.
  4. Deglaze the pan with the sherry.
  5. Add the paprika, hot water and lobster base and combine well.
  6. Stir in the tomato paste and add the bay leaves.
  7. Simmer for 10 minutes.
  8. Whisk in the heavy cream and butter and bring to a boil.
  9. Add the lobster and simmer until cooked through.

*Crab is easily substituted here, as well as a hearty seafood stock, if lobster base is unavailable. If using stock, omit the cup of hot water.

Excerpted from Healing & Easy Eats: Recipes for Head and Neck Cancer Patients and Survivors (Second Edition), the official cookbook of the Head and Neck Cancer Alliance. Copyright © 2018. Available soon from this website!

Ambassador Profiles

The HNCA Ambassadors are dedicated to educating the community-at-large about these cancers. Our ambassadors are cancer patients, survivors and/or caregivers whose inspirational journeys give true meaning to what happens when you are diagnosed with cancer, during and post-treatment. 

If your organization is hosting an event, conducting research on patient journeys or designing clinical protocols, contact HNCA at info@headandneck.org or fill the online request form to inquire about our HNCA Ambassadors’ potential involvement.

Inaugural Orlando Tennis Tournament 
'Smashing' Success

Smash Cancer is an fundraiser held annually in Wilmington, NC, and started by The Howard Family, who lost both of their parents to head and neck cancer. 2018 marked the 6th annual tournament, and each year it has grown in participation and in oral cancer screenings provided. This November, this event reached new heights when a second tournament was organized in beautiful Orlando, FL. Like the original event, this tournament was a U.S. Tennis Association-sanctioned event and offered on-site oral risk assessments.  Organized by HNCA Board Member Jason Mendelsohn and Wilmington organizer Christine Tatum, the event was a “smashing” success, with $35,000 raised to support HNCA’s Gas Card program. Thank you, Jason and Christine, for your dedication and amazing support of HNCA and head and neck cancer patients!

Survivor Stories: Carolyn and Rusty

Meet Carolyn, a sinus cancer survivor, who focuses on the blessings in her life to continue healing and encouraging others. 

Rusty knows that cancer doesn’t discriminate. Fighting #cancer is hard enough, but fighting misperceptions makes the burden heavier to bear.

BOD Happenings:

The dynamic HNCA Board of Directors have been busy educating and advocating for head and neck cancer patients around the world. 

  • Dr. Terry Day participated in a free CancerCare Connect® Education Workshop/Teleconference called Genomics and What’s New in the Treatment of Oral and Head and Neck Cancers, which provided an overview of the treatment of oral and head and neck cancers and the importance of early genomic testing before you begin treatment. LISTEN NOW.
  • Dr. Itzhak Brook traveled to Shanghai, China in October to present as a keynote presenter at the 1st Annual International Ophthalmology and Otolaryngology Nursing Forum and introduced the his Laryngectomee Guide, newly translated in Simplified Chinese.
  • Dr. Itzhak Brook  was also featured in the Jerusalem Post article, "An Israeli Physician Helps Improve the Lives throughout the Middle East."
  • Jason Mendelsohn shared his cancer story and his two events, Smashed Cancer Smash Cancer tennis tournament, with 1059 Sunny FM Radio. 
  • Jason Mendelsohn talks about his cancer story and HPV-related cancer prevention for boys and girls in a podcast with Voices for Vaccines.
  • Meryl Kaufman, M.Ed., CCC-SLP, BRS-S, and Itzhak Brook, M.D., M.Sc. discuss head and neck cancer through the eyes of a patient in their Cure Connections video series.

Helpline

Whether you are a patient, survivor, or caregiver, you can call HNCA’s Patient HelpLine when you need a professional and objective ear. Counselors and resource specialists are available to connect you to helpful resources or offer advice. The HelpLine is available in English or Spanish, Monday through Friday from 9am – 9pm Eastern. A live chat is also available.
Call (866)-916-5107.

Get Involved and Support Our Efforts

YOU have the power to help fund research, raise awareness and advocate for access to care. Interested in contributing your time or supporting HNCA? We offer a variety of ways to get involved:

  • Organize a fundraising event in your community;
  • Donate. Your unrestricted gift is key to supporting our mission and our most critical programs;
  • Become a Corporate Partner of events and/or patient-focused or clinician education programs;
  • Partner with our organization and host a screening in your community (only available to clinicians).

For more information on the Head and Neck Cancer Alliance, click here.

Thank You to our Corporate and Community Partners

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