The Head and Neck Cancer Alliance brings to you
its updated and refreshed quarterly e-newsletter.

HNCA News Bulletin

January 2018

Director's Corner
Holly Boykin MA CHE, HNCA Executive Director


Protecting Tomorrow with a Screening Today

The Head and Neck Cancer Alliance (HNCA) is hosting its 20th Annual Oral, Head and Neck Cancer Awareness Week® (OHANCAW®) during April 8-15, 2018 and looks to another year of teaming up with hospitals, medical and dental clinics worldwide to provide oral, head and neck cancer screenings.

Twenty years ago, a small group of health professionals came together to develop a screening and awareness program to help save lives and inform the public about the symptoms of head and neck cancer.  That small group has grown to a partnership of more than 400 facilities worldwide who annually host health educational events and screenings in their community.  THANK YOU to all our partners, who have previously joined us in hosting OHANCAW® screenings and awareness events. HNCA looks forward to working with all of you again this year. HNCA also wish to say, WELCOME to our new partners who will join us in 2018.

Registration for OHANCAW® Screening Sites is now open. It involves an easy and simple process to host a screening event in your local community. HNCA provides the materials and the screening sites organize the staff and volunteers. This registration is open ONLY to hospitals, medical and dental clinics, and other medical facilities, and not to individuals.

To register your screening site and receive FREE educational materials for your OHANCAW® screening, click here. We will be shipping the OHANCAW® kits in mid-March. (Please note that you MUST register an account, login and then submit a screening event in order to receive your free kit and listed on our website.)

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.

Please join us for the 20th Anniversary of OHANCAW®.

HNCA in Your Community:


Tee-rific Turnout in Apopka, Florida 

2nd Annual Jeff Park Memorial Golf Tournament, held in early December, honors a devoted husband and friend while raising almost $10,000 to support the Head and Neck Cancer Alliance. HNCA thanks Jeff’s wife, Laura, other family members, friends and all who participated.

Learn more about Jeff and the memorial golf tournament honoring him.

Solving the Multimodal Puzzle of Head & Neck Cancer in the Immunotherapy Era:
How Evidence is Driving Practice Changes

The Westin Kierland Resort and Spa
Trailblazer A/B
6902 E Greenway Parkway Scottsdale, Arizona 85254
Wednesday, February 14, 2018
6:30 p.m. - 8:00 p.m.

Register Online Here

(Held in conjunction with the Multidisciplinary Head and Neck Cancer Symposium)

Chaired By Ezra Cohen, MD, FRCPC, FASCO
Member - Board Of Trustees, Head and Neck Cancer Alliance
UC San Diego
San Diego Center for Precision Immunotherapy
UC San Diego Moores Cancer Center
La Jolla, California

Activity Description & Educational Objectives

The puzzle of optimal therapy for squamous-cell cancer of the head and neck (SCCHN) is one step closer to being solved with the recent arrival of immunotherapy. Immune stimulation via checkpoint blockade has now joined other effective therapeutic “puzzle pieces” to build an intriguing picture of what multimodal therapy for head and neck cancer (HNC) will look like in the coming years. The key ongoing question, and perhaps the final piece to the puzzle, is how checkpoint inhibition will be integrated into various treatment settings, including as first-line therapy for metastatic disease, as part of treatment for locally advanced HNC, and potentially as a component of adjuvant therapy for resectable disease.

PeerView’s latest interactive, patient voice-inclusive live symposium will attempt to answer this question, and much more, by offering expert views on the most up-to-date evidence supporting the use of checkpoint blockade in various HNC treatment settings and key insights into the future of SCCHN management via the combined use of immunotherapy, radiation, and surgery. That’s not all; this event will also feature voices and views of patients with HNC in collaboration with our educational partner, the Head and Neck Cancer Alliance. Don’t miss this exciting and innovative event!

Upon completion of this activity, participants will be able to:
  • Cite updated evidence on the efficacy of immunotherapy in the SCCHN setting, including data on response, survival, and biomarker-guided treatment
  • Integrate immune checkpoint inhibitors into the management of patients with recurrent/metastatic SCCHN
  • Select patients with SCCHN who are candidates for treatment with immune checkpoint inhibitors in the context of a clinical trial, including individuals with locally advanced or resectable disease
  • Manage immune-related adverse events in patients with SCCHN receiving immunotherapy or multimodal combinations with immunotherapy components

The 2018 Multidisciplinary Head and Neck Cancers Symposium Steering Committee has reviewed and approved this symposium as appropriate for presentation as an Industry Satellite Symposium (ISS). The ISS constitutes the content and views of the sponsor and is not part of the official 2018 Multidisciplinary Head and Neck Cancers Symposium program.

This CME/CE/CPE activity is jointly provided by Medical Learning Institute, Inc. and PVI, PeerView Institute for Medical Education.

This activity is supported by an educational grant from Merck & Co., Inc.

What's New with HNCA:

HNCA Launches Cancer Support Helpline for Patients

The Head and Neck Cancer Alliance now has a professionally-staffed Cancer Support Helpline for our cancer patients and provides resources, along with emotional and psychosocial support, to individuals impacted by head and neck cancer.


Helpline: (866)-916-5107

Staffed by eight counselors and three resource specialists, who have over 150 years of combined experience, the Cancer Support Helpline helps individuals affected by a head and neck cancer diagnoses.

  • Hours of Operation: Monday – Friday; 9 am – 9 pm (EST)
  • In addition, a live online chat is also available, from 9 am – 9pm.
  • Services are offered in both English and Spanish.

Our Nutrition Program has Begun:

Recipe Contest - Win a Vitamix® Blender

HNCA has heard from many HNC survivors, patients and caregivers that eating is a challenge.  Even harder is enjoying foods that are nutritious and taste good.  Therefore, we are delighted to begin the HNCA Nutrition Program to offer tips and recipes to improve your quality of life.

HNCA is seeking nutritious and tasty home-created recipes for head and neck cancer patients and survivors.  By submitting your very own recipe, you may have the opportunity to win a Vitamix® Blender and have your homemade recipe featured on the HNCA website.

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

  • Name of homemade recipes
  • Individual’s first and last name, along 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?

Recipes will be evaluated, tasted and the select 3 recipe creators will receive a free Vitamix® Blender quarterly and recipes will be added to the HNCA website's recipe page.

Coming Soon in HNCA:

Exciting Partnership Campaign Announcement
Coming at the end of January

HNCA Cookbook Will be Available Soon

HNCA’s very own cookbook, Healing and Easy Eats, created specifically for head and neck cancer patients, survivors and their families, will be available soon. Offering more than 120 recipes from chef George Chajewski and two cancer survivors Lisa Reed & Ryan Gainor. Healing and Easy Eats is a collection of easy-to-prepare meals to help nourish, sustain and provide loving support for all patients, survivors and their families.

Please continue to visit, www.headandneck.org for the latest details and information.

Cancer Survivor Highlights:

Reed Recovers, Renews & Receives News of Remission

A new year, the possibilities I cannot even imagine. You see I live in the moment, the now, the present, the day. I have been battling cancer since 2007. Squamous Cell Carcinoma to be exact. A very aggressive form of cancer that started in my left tonsil. It then moved to my tongue, where I lost a portion of it in 2011. I fared surprisingly well, when losing the small portion of my tongue, and it merely put a small dent in my lifestyle.

By 2012, however, it had invaded the base of my tongue in which it was necessary to remove two-thirds of my tongue. I underwent a 12-hour surgery to rebuild my tongue in what is called a Left Radial Forearm Free Flap. Basically, my tongue was reconstructed, using the muscle from my forearm. Science has shown that our bodies respond best when using our own parts. We are our own salvage yards. As you might imagine, I have a significant speech impediment as my arm is learning how to be a tongue.

I had initially gone through a high dose of radiation treatment in 2007 when I was first diagnosed with cancer, having the usual seven-week protocol. This time, however, I was prescribed seven weeks of radiation along with four-high dose chemotherapy sessions, which began at 7 a.m. and last until 7 p.m. A port and feeding tube were surgically inserted for both treatment and nourishment.

Cancer truly is a full-time job. Radiation treatments are daily Monday through Friday and on my chemotherapy days, I find myself packing a bag as if I were going on a trip, breaking only to run upstairs to undergo my scheduled radiation treatment for that day. I spent many days in the Infusion Center for prescribed fluid infusions as the chemotherapy was making my severely dehydrated and depleting me of vital minerals and vitamins.

Grocery shopping became a heartbreaking chore but necessary to feed the rest of the family. I bought Boost and Ensure for my feeding tube. Sadly, I started to dread the grocery store a place I used to love to go to create beautiful meals for my family and friends. You see I come from a family of amazing cooks, big “foodies” and I, too, loved to cook, bake and entertain friends and family often. I would prepare a meal for my family and then, literally, have to leave the room. I could not bear to watch them eat something I could not. Oh, and the smell of delicious food would put me in tears and eventually make me mad. So mad that no one dared to tell me how good it was. I made everyone around me uncomfortable.

People would say, “Have you tried this or tried that?” These were very hard questions to even try to answer. Meatloaf dinner does not taste good in the blender! You see the base of your tongue is the muscle that pushes your food down as you swallow. Losing that meant I was working strictly on gravity to swallow. My food had to be in a more liquid state or it would just sit there in my mouth. I was becoming depressed.

Depression is death in recovery. It was at this point, I realized it was up to me to make something happen, so I got busy. I researched nutrition and scoured bookshelves for books focusing strictly on soups. Many recipes I had to reinvent to make them possible for me to eat. I learned it was impossible for me to swallow the skin on corn kernels. Who on earth ever thought of that? So I had to run corn through the blender, then a food mill to be able to eat my squash and corn chowder soup. Totally worth the extra effort in the end. Plus this was a step I could skip when feeding others. I was determined to eat healthy DELICIOUS food I could prepare for myself and others.

My hard work and determination paid off in the end. I was sustaining myself and my medical team finally agreed to remove my feeding tube -- almost six months earlier than expected. Besides the dreaded cancer diagnosis, breaking up with food had been one of the hardest things I ever had to do.

My life seemed to become, once again, recognizable to me. I was enjoying my passion for cooking and eating delicious meals. I finally worked myself up to more solid foods and basically tried to eat anything I could get my hands on. I have settled down some since then.

In September of 2016, I had a bit of a set back where my jawbone had started to die due to all the radiation treatment. I had to have my lower left mandible removed due to the necrotic bone. A mandibulectomy with a fibular free flap they call it. In short, they rebuilt my jaw from the fibula of my right leg. I was down, but not out.

Fortunately, for me this time, my feeding tube was placed in my nose. Through sheer will and determination, I was able to leave the hospital five days early and had the feeding tube out in two short weeks. I had to beg them, mind you, with the promise I would return if I had any problems.

I have now become sort of the office mascot. They have asked me to reach out to other patients who are struggling and need some creative inspiration. A job I do not mind. Cancer requires thinking outside the box.

I tell my story because I was only given 5 years to live, 5 years ago. On December 21st, I was given the news I was told I would never hear. “You are in remission.”

I am a fighter.
I am a warrior.
I am Lisa Reed.

Recipe Card 05: Savor Health's Blueberry Green Nut Butter Smoothie

This is a great introduction to a green smoothie because the sweetness from the banana and dates and the creaminess from the peanut butter help mellow the flavor of the leafy greens. Green smoothies are especially good if you have a lack of appetite because they provide a lot of nutrition in just a few sips.

Time: 5 minutes

Yield: 1 serving

Ingredients:
  • 3/4 c frozen blueberries
  • 1 c leafy greens, such as spinach or kale
  • 1 tbsp peanut butter or any nut butter
  • 3/4 c milk
  • 1/2 medium-size frozen or fresh ripe banana, sliced
  • 2 Medjool dates, pitted
  • 1/2 c ice
Cooking Steps:
  1. Place all the ingredients into a blender.
  2. Blend until smooth. Pour into a glass and enjoy!
Nutritional Analysis:

Calories 413, Total Fat 11 g, Saturated Fat 3 g,
Cholesterol 9 mg, Sodium 203 mg, Carbohydrates 76 g, Dietary Fiber 11 g, Protein 13 g

Excerpted from The Meals to Heal Cookbook by Susan Bratton and Jessica Iannotta, MS, RD, CSO, CDN. Copyright © 2016. Available from Da Capo Lifelong Books an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.

Why Clinical Trials are Important:
Help HNCA and Others Find Ways to Help You


Clinical trials are research studies that involve patients, caregivers and/or survivors. Through clinical trials, doctors, researchers and non-profits find new ways to improve treatments and establish programs that improve the quality of life for people with diseases.

Most commonly, clinical trials are used to test the safety and effectiveness of drugs and devices. Usually, they are sponsored by pharmaceutical companies and are conducted by research teams that include doctors and other medical professionals. Typically, trials are typically conducted in four phases:

Phase I

Trials help determine the optimal amount or dose of a new therapy that can be given safely to participants. These studies typically have a small number of participants, often fewer than 20.

Phase II

Studies continue to evaluate safety, but also begin to assess a therapy’s effectiveness. These trials typically have more participants than phase I trials.

Phase III

Studies compare the effectiveness of a new therapy or combination of therapies with a standard treatment, and may include hundreds or thousands of participants.

Phase IV

Trials continue to study the safety and effectiveness of a treatment after it has been approved by the US Food and Drug Administration.

All of the phases in clinical trials are governed by strict protocols, and are overseen by many regulatory bodies, from the Food and Drug Administration (FDA) to small Independent Review Boards (IRBs). IRBs are a group of independent medical experts, ethicists, as well as lay people. Researchers report periodically to the IRB, outlining such things as contact with patients, the tests conducted, the results recorded and even the side effects reported

Through clinical trials, you may have access to new approaches to treating cancer that may be more effective than the current best or standard treatments. Just as you may benefit from the results of previous clinical trials, the results of current clinical trials may advance the care of all those diagnosed with cancer now or in the future, leading to improved treatments with the possibility of fewer short- and long-term side effects.

Currently, HNCA is partnering with various research entities on educating patients, caregivers and survivors on opportunities to participate in various clinical trials – some of them can be done from the convenience of your home – please contact hboykin@headandneck.org for more information.

Please also visit to www.ClinicalTrials.gov — a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. ClinicalTrials.gov currently lists studies with locations in all 50 States and in 200 countries.

For the best results in searching for head and neck clinical trials, please be sure to review the www.ClinicalTrials.gov or other databases for instructions. In addition, work with your healthcare provider on specific terminology as it relates to you or your loved one’s head and neck cancer diagnosis. For additional information on clinical trials, the National Institutes of Health is also a helpful resource.

Key information to know for your head and neck cancer clinical trial search includes:
  • Histology (squamous cell carcinoma, adenoid cystic carcinoma, adenocarcinoma, etc.)
  • Site of head and neck cancer (tonsil, parotid gland, larynx, etc.)
  • Recurrent or First Presentation. If recurrent, know how it was treated before (surgery, radiation, chemotherapy, and drugs used for treatment).
  • HPV-related

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 numerous opportunities to get involved:

  • Organize an event in your community;
  • Become a Corporate Partner of events and/or patient-focused or clinician education programs;
  • DONATE – your unrestricted gift is key to supporting our mission and the most critical programs – To DONATE online click here.
  • Clinicians – partner with our organization and host a screening in your community.

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

Thank You to our Corporate and Community Partners

Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.