The Head and Neck Cancer Alliance brings to you its updated and refreshed quarterly e-newsletter.
HNCA News Bulletin
Over the past couple of months, the HNCA Board of Directors and I have taken the opportunity to fine tune the organization’s strategic plan -- focusing primarily on programs and services. As part of our strategic outreach efforts, we have spent time actively listening to various stakeholders. Thank you to our patients, survivors and caregivers who have generously spent hours providing feedback regarding their needs, personal cancer journeys as well as HNCA programs.
With all of our key stakeholders, the same topics are resonating: the need for more awareness of oral, head and neck cancers; the importance of early detection; the impact of the cancer diagnosis on the entire family; and quality of life, following treatments, for both short- and long-term outcomes.
Financing oral, head and neck cancer patients’ healthcare programs and treatments is on the rise; and therefore, the demands for additional HNCA programs and services are desperately needed. Finally, many oral, head and neck cancer patients and survivors are requesting online programs webinars, support networks and blogs, whereby they can participate from both home and work.
Cancer impacts all of us!! On October 19th, the Head and Neck Cancer Alliance is hosting a webinar with Jim Kelly, NFL Hall of Fame Quarterback, which will focus on his cancer journey, quality of life and nutrition. It will be an educational and engaging opportunity for all of us – please go to www. headandneck.org to register.
Please support the Head and Neck Cancer Alliance by registering your screening event, liking our social media pages, sharing your cancer journey and/or spreading the word about the Head and Neck Cancer Alliance.
Have a great fall season!!
Holly Boykin, MA Che
HNCA Executive Director
You're Invited to Hear Jim Kelly's
Inspiring Cancer Story
Throughout his pro football career with the Buffalo Bills, Jim Kelly was known for his strength and motto: “Kelly tough.”
Built on the importance of being mentally and physically strong and able to bounce back from injuries, the motto took a on new – and more important – meaning in 2013 when Kelly was diagnosed with cancer in his upper jaw. After a long and challenging road, in August 2014, doctors gave Kelly the good news that they could no longer find evidence of any cancer.
Now he’s on a mission to help other people with head and neck cancer (HNC) through the Your Game Plan program. As part of the initiative, Kelly will discuss how the positive attitude and persistence that he learned as an athlete helped him in his journey, as well as the importance of nutrition and support from his friends and family.
Kelly will be joined by advocacy partners: Head and Neck Cancer Alliance and SPOHNC (Support for People with Oral and Head and Neck Cancer), in addition to Savor Health, a nutrition provider for people with cancer.
HNCA Partners with MLB to Educate Fans on the Importance of Early Detection and Treatment
HNCA is partnering with Major League Baseball (MLB) to reach its millions of fans on the importance of early detection and treatment of oral, head and neck cancers. HNCA is also working to educate MLB fans on the detriments of tobacco usage.
“Partnering with Major League Baseball is a strategic alignment to reach millions of Americans,” said Holly Boykin, HNCA’s Executive Director. “By connecting with baseball and America’s favorite past time, HNCA is reaching and educating millions daily on the importance of early detection in MLB ballparks where fans gather, to having a presence on one of the most highly-trafficked sports websites as well as being afforded the opportunity to connect with hundreds of thousands at one of the world’s largest sports theme parks.”
In July, HNCA representatives exhibited at the four-daylong MLB FanFest in San Diego where thousands of baseball fans stopped by to learn more about oral, head and neck cancers.
Throughout the fall, HNCA will exhibit at a host of MLB games, including: Washington Nationals, San Diego Padres, New York Mets and many more.
Geoff’s Journey Through Head & Neck Cancer
I was nearing the end of my 15-year engagement with British Aerospace when I started getting a husky voice and was then hospitalized for a few days, due to passing out a couple of times. About a year later, I suffered similar voice problems and my voice would come and go. I made an appointment with my local general practitioner who immediately referred me to a consultant at my local hospital.
The consultant took a telescopic look down my throat via my nose and then said “You know what this is, don’t you?” I immediately knew and replied “Yes, I think so.” After various scans, x-rays and being prodded and poked, I was informed that the cancer on my larynx was T-4 which meant it was aggressive, was already eating my larynx and was now looking for somewhere else to go. We then discussed the options.
I was given a total laryngectomy in January 2009 and they also removed the lymph nodes in my neck and part of my thyroid. This all went well and I healed surprisingly quickly. And soon I was eating, drinking and talking again with confidence.
Some weeks after that operation, I was to endure 37 consecutive days of radio-therapy and weekly sessions of chemotherapy. This too went well although I did start to get nauseous and my neck was quite burned. I had to be readmitted to hospital as I was dehydrating badly. I overcame this hurdle and soon I was up and about and going about my normal daily routine. After a few months I started to suffer frequent problems with my speech valve in my throat and had to have it changed frequently.
Apparently, the effects of the radio-therapy had badly scarred the tissue inside my throat. I was in and out of the hospital over the next few years until 2014, when I was eventually unable to eat or drink by mouth, or talk at all for eight months.
It’s now over seven years since my laryngectomy and the hair under my arms or my chest has still not grown back! And when the sun shines hot, my neck starts to cook again from the radio-therapy effects. Prior to the radio-therapy sessions I was fitted with a PEG in my tummy to enable me to take food and liquid directly into my stomach. I still have the same PEG fitted some six years later!
Eventually, in 2014 my consultant referred me to a consultant surgeon in the Northeast of England where I underwent a Major Pectoral Muscle Flap. This entailed taking muscle tissue from my left chest / breast and flapping it into my neck.
This all went remarkably well and I was up and running again reasonably quickly. I was again able to eat, drink and talk. I can eat and drink, albeit slowly, and the food must be soft and small.
The Way Ahead
Another operation is necessary to realign my speech valve and it’s not sitting right and this is preventing me from using what voice I have left. However, my consultant seems somewhat hesitant as he’s said to me “That sometimes when we try to put things right, we can make matters worse.” That hasn’t instilled me with a great deal of confidence, but I completely in their hands. It may be that I will have to take the choice between eating and drinking or talking. I may not be able to have both. My choice would be to be able eat and drink!
So... my journey hasn’t finished yet!
GEOFFREY N. READ
The Griffith Family Honors Their Beloved Husband and Father, Jim
Dear Head and Neck Cancer Alliance:
Jim Griffith was diagnosed with tonsillar cancer in 2012. With very aggressive treatment of surgery, chemo, and radiation, he was in remission in early 2013. In 2014, the cancer returned. This time it had spread to his lungs and the lymph nodes around his heart. This time, surgery was not an option due to the location. So a cocktail of chemotherapies were used. After just under a year, the doctors informed Jim that this treatment wasn’t working. So Jim’s family searched for another answer.
This led him to clinical trials. Jim and his wife, Debby, made a long trip from WV to NY to Sloan-Kettering Memorial Hospital. Here Jim was approved to begin the clinical trial for immunotherapy. At first it showed some decrease in size, but this did not last long. After a few months Jim again was informed he needed to find another options. Through testing, he was informed that he qualified for a genotherapy that was being used only for Breast Cancer. Jim decided to give it a try. After the first series, he was scanned and the tumors being tracked showed 45% decrease in size. In March of 2016, Jim became very ill and he was in and out of the hospital. On his regular trip to NY, he was admitted to the hospital and stuck in NY for over 2 weeks. During this time he lost around 40lbs. The immunotherapy side effects were finally wearing him down. Shortly after, he was released from the genotherapy trial. Again, with testing, he was informed he could try a HPV medication that in large amounts was being tested for cancer. This medication made Jim feel even worse, and at this point his body had become too weak to continue. He made the decision to stop taking the pills. His local family doctor started palliative radiation. On August 7, 2016, surrounded by his wife and three children, Jim found peace and was no longer suffering.
Jim was a big supporter of research and constantly was willing to do anything to help others. He always said, "If it will help someone else, I'll do it." He was strong and brave, and he fought a long battle. Jim was 55 years old. He passed just two weeks short of his 54th wedding anniversary. His children, Brent (28), Kelsey (26), and Colton (19), and wife Debby (55) who will always carry him in their hearts and remember him for his strength and sense of humor through it all.
The families decided in lieu of flowers, that Jim would rather us collect donations for research. After searching different options, we selected Head and Neck Cancer Alliance to receive the donations. We hope that this money can help further research, and maybe give others a chance to defeat cancer. Jim would want everyone to have the best chance, and to feel like they are not fighting alone.
Nutritional Management During Oral, Head and Neck Cancer Treatments
Treatment for oral, head and neck cancers can cause side effects, including weight loss, fatigue, nausea, diarrhea, constipation, low blood counts and increased risk of infection.
These side effects can inhibit your ability to stay nourished and interfere with your treatment. In addition, depending upon your treatment plan, you may experience discomfort and pain in chewing and swallowing.
THINK “SOFT” DIET
- With the oral, head and neck cancer diet, think soft and moist.
- Invest in a blender to puree fruits and vegetables, and create soups.
- Be sure to drink plenty of water and liquids to minimize dry mouth symptoms.
ASK ABOUT NUTRITIONAL SUPPLEMENTS
- Vitamin supplements, especially vitamin D and vitamin B, are important.
- Zinc may stimulate taste, which is important in the oral, head and neck cancer diet.
WHIP UP PROTEIN SHAKES
- A lot of protein in your diet will help to meet your nutritional needs.
- Make a shake or smoothie out of protein powder, low-fat milk, soy milk, or rice milk and add a flavorful fruit.
- Look for a protein powder that contains whey.
ADD CANCER-FIGHTING FOODS
- High levels of phytochemicals from plants that have been shown to build up the immune system and help fight infections.
- That means plenty of fruits and vegetables.
- Red berries and green tea have both been shown to be very beneficial in a cancer-fighting diet.
CONSIDER FISH OIL
- Fish oil contains fatty acids that is important part of the oral, head and neck cancer diet.
- Can be given as a liquid or capsule
- Also contains natural anti-inflammatory properties.
- Shown to promote healing and maintain weight and muscle.
AVOID FOODS THAT CAUSE DISCOMFORTS
- Cut out foods that are sharp and crunchy, and require a lot of chewing.
- Foods that are spicy or acidic, such as citrus fruits, can cause mouth pain.
- Also rule out drinks or foods that contain alcohol.
MANAGEMENT OF SWALLOWING AND SPEAKING PROBLEMS ASSOCIATED WITH ORAL, HEAD AND NECK CANCERS
Individuals who have oral (mouth), laryngeal (voice box), or pharyngeal (throat) cancers can have difficulty with swallowing food or drinks (dysphagia), changes in the sound of their voice and/or speaking clarity. The amount of difficulty an individual experiences, related to swallow or communication, usually depends upon the size and location of the tumor, the type of medical treatment, and if surgery and/or reconstruction is needed.
Difficulty swallowing food or drinks can include the following:
- need to swallow many times to clear out the mouth or throat
- frequent throat clearing
- coughing and/or choking
- pain when swallowing
- change in voice after eating or drinking that sounds wet and gurgles
- shortness of breath
- runny nose
- food or drink coming out of the nasal cavity
Changes in voice or pronunciation of words can also occur. Some patients complain of a lower or hoarse sounding voice, shortness of breath when speaking, a hard time getting voice out or muffled speech. Patients should inform their physician about the occurrence of these symptoms.
The treating physician can refer the patient to see a Speech-Language Pathologist (SLP). These are professionals that are highly trained in evaluating swallowing, speaking and voice problems. They develop individualized therapy programs to improve the ability to eat, drink or communicate. When an individual is diagnosed with a laryngeal or oral cancer, it is helpful to have a swallowing and a speech evaluation performed early in the diagnostic process. It is best to complete an initial evaluation before medical treatment, such as chemotherapy, radiation treatment or surgical intervention occurs.
The SLP may recommend additional tests such as a Modified Barium Swallow Study (MBSS) or a Fiber Optic Endoscopic Evaluation of Swallowing (FEES). Both of these tests are useful to gather information about swallowing and communication skills before medical treatment begins.
A MBSS is a test done in the radiology department by the SLP and Radiologist. Various food textures and liquid consistencies are mixed with barium. The patient consumes food and drink as the SLP and Radiologist assess swallow function by watching a moving x-ray of the food being swallowed. A FEES is performed by a trained SLP who will pass a thin flexible endoscope through one of the patient’s nostrils. The endoscope has a lens that allows the windpipe (larynx) and throat (pharynx) to be directly viewed as food and drink are being consumed.
A MBSS and/or FEES will aid the SLP in providing the patient with specific exercises to perform throughout the medical treatment process. These exercises can help a patient maintain a better sounding voice, best speaking clarity and/or maintain eating/swallowing throughout the course of medical treatment. Additionally, the SLP may suggest modifying the texture of food; thickness of drinks/liquids or teach ways to best posture the head and neck so that it is easier and safer to swallow. The SLP will look for signs of aspiration, which is when food or drink goes into the larynx (windpipe). An individualized exercise/ treatment plan will be developed to improve the ability to swallow nutrients by the mouth.
Swallow problems may become more obvious during the course of medical treatment. Various treatment options for managing oral, head and neck cancers can result in soreness of the mouth, dry mouth/no saliva, difficulty with moving food with the tongue, chewing problems or pain that causes avoidance of eating. Medical treatment can also result in hoarse voice, loss of voice and stiff mouth. These can occur after reconstructive surgery of part of the mouth or throat.
The SLP will work with the patient to maintain eating/swallowing and communicating abilities that are as independent and functional as possible before, during and after the course of treatment. The goal of therapy is to maintain the best quality of life during the treatment and recuperation process.
Additional information regarding Speech-Language Pathologist and dysphagia management can be found by visiting The American Speech-Language and Hearing Association at www.ASAH.org.
Christine M. Bove, M.A., CCC-SLP
OHANCAW® Registration Begins Next Month
Registration for the Oral, Head and Neck Cancer Awareness Week® (OHANCAW®) will begin in mid-November. Please be sure to go to www.headandneck.org for the latest news and information.
Scheduled from April 2-9, 2017, OHANCAW® is the perfect opportunity to join hundreds of national and international screening site to raise awareness of the importance of early detection.
HNCA provides educational pamphlets, promotional t-shirts, giveaways and screening forms to all screening sites who officially registers for OHANCAW.
We look to another record-breaking year of screening site participation. Please be sure to register early!
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.
Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.