HNCA News Bulletin

March 2021

 
Help Us Raise Awareness of Oral, Head and Neck Cancer
Awareness Week is April 11-17, 2021
 

Oral, Head and Neck Cancer Awareness Week is coming up! While HNCA is not recommending screening events in April due to the ongoing COVID-19 pandemic, we will be sharing information and resources online to help raise awareness of head and neck cancer from April 11-17. We invite our medical, dental, and corporate partners, supporters, patients, survivors and caregivers to help us spread the word about what head and neck cancer is, its symptoms and risk factors.

If you would like to receive our package of digital materials to share on your own or organization’s social media, please join the mailing list!  Materials will be sent out the week of April 5.

 

My Experience with Lymphedema (Part 2)

By Jacki Rogozinksi, HNCA Ambassador and Survivor of Stage IV Oral Cancer (Austin, TX)

The greatest likelihood of developing lymphedema occurs in the first five years after cancer treatment, although the risk is lifelong. I started seeing symptoms quite soon, within a couple of months after treatment. Because lymphedema is a progressive condition, one that worsens over time if left untreated, early intervention will lead to the best outcomes. So, if you’re experiencing symptoms, it’s important to seek treatment as soon as possible.

 

FEATURED RESOURCES

Lymphedema is a common side effect of treatment for head and neck cancer. Identifying and treating it early is the best way to minimize its effects. Learn what lymphedema is and how to manage it with these new resources. 

 
 

Treating Lymphedema

A downloadable resource that describes what lymphedema is and how to manage it.

Exercise & Stretching

A downloadable resource that outlines simple exercises/stretches that can help reduce lymphedema.

Posture, Positioning & Apparel

A downloadable resource that shares simple tips on body mechanics that can help relieve lymphedema.

 
 

Skin Care

A downloadable resource that offers tips to help lymphedema patients maintain a healthy skin barrier.

Diet & Medications

A downloadable resource that shares information about diet and medications that can impact lymphedema.

Head and Neck Cancer & Lymphedema

An infographic that can be shared online to educate others on lymphedema related to head and neck cancer.

 
 

HNCA thanks Tactile Medical for its support of our ongoing patient and survivor education initiatives.

 
 

Upcoming Webinars

 

Exploring Clinical Trials in Head and Neck Cancer

Join Head and Neck Cancer Alliance, Support for People with Oral, Head and Neck Cancer (SPOHNC), and SQZ Biotechnologies from 1:00-2:00 p.m. for a discussion on clinical trials within head and neck cancer as seen through the eyes of an oncologist, researcher, and patient.

 
 

Treatment Update in Oral and Head and Neck Cancer

Join HNCA Chairman of the Board Dr. Terry Day for a free CancerCare Connect ® Education Workshop for people living with oral & head & neck cancer, their families, partners, caregivers, friends and health care professionals. Learn more!

 
Caregiver Needs
 
Join  Marie Tobin MA, FACLP Professor of Psychiatry and Behavioral Neuroscience at University of Chicago, Dorothy Gold MSW, LCSW-C, OSW-C, Oncology Social Work Clinical Specialist at  Milton J. Dance, Jr. Head & Neck Center (Baltimore, MD), Allison Breininger, Writer, Speaker, and Caregiver Advocate at The Negative Space, and HNCA Caregiver Ambassador, Kristi Mason for a discussion of the role and unique needs of those who provide care to a loved one with cancer.  Registration will be open soon!
 
 
 

*Sponsor Content | Learn HNCA's stance on corporate support below.

 

My Cancer Experience: Signs, Symptoms and Side Effects

By Melvin Leblanc, HNCA Ambassador and Survivor of Head and Neck Cancer (Houston, TX)

A lump started forming on the right side of my neck just below my ear during the first two weeks of May 2018. I visited two clinics undergoing a total of 5 needle biopsies to the lump, with no conclusive results, but cancerous possibilities. I went to MD Anderson Cancer Center located in Houston Texas, and with an additional 2 needle biopsies, it was determined on May 15, 2018 that I had Metastatic Squamous Cell Carcinoma. 

 

Congratulations, Melvin!

As a cancer survivor, one of Melvin's dreams has been to participate in the Senior Olympic Games. We are proud to share with all of our survivors, patients and supporters that his goal was achieved! Melvin recently won the championship gold medal at the Texas Senior (Pickleball) Games, which allows him to participate in the 2022 Senior Olympic Games. Congratulations, Melvin, on this momentous achievement!

 

Global Patients Seeking HNC Patients for Research Study

 

Global Patients is conducting a study in recurrent or metastatic Head and Neck Squamous Cell Carcinoma (head and neck cancer) with adults in the US. The study consists of a 90-minute telephone/Skype interview, and in appreciation for your time, you will be compensated with $150, plus $25 for providing the research team with a confirmation of your diagnosis from your doctor. Based on your preference, the interview can be conducted as two 45-minute interviews or a series of shorter interviews. During the interview, you will be asked about your experience of living with the cancer in relation to the symptoms you experience and how it impacts your life. You will also be asked to complete some questionnaires and asked questions about them.

 

The study is completely voluntary and complies with all relevant laws protecting your personal data with respect to anonymity, confidentiality, and ethical practice research.

 

If you would like to take part in this study, please send an email to cristina@global-patients.com

 
 

Find Support to Help You Through Your Head and Neck Cancer Journey  

The Head and Neck Cancer Alliance, through a new partnership with Imerman Angels, now offers peer-to-peer support for the head and neck cancer community. Through a unique matching process, we will connect head and neck cancer survivors and caregivers (known as Mentor Angels) with patients and patient caregivers who share similar cancer journeys. Mentor Angels are available to lend support and empathy, help cancer fighters and caregivers navigate the system, determine their options, and create their own support systems. We are now accepting applications for new/current head and neck cancer patients and patient caregivers. 

 

Note: The service is free and helps everyone touched by cancer. All Mentor Angels are properly screened and trained. We ask that you only register yourself.  

This program is made possible through a partnership between
Head and Neck Cancer Alliance and Imerman Angels.

 

Safety of Celebrating the Spring Holidays with Family and Friends for Head and Neck Cancer Patients 

By Itzhak Brook, MD, HNCA Board Member, Ambassador, and Survivor of Throat Cancer (Washington, DC)

The upcoming spring holidays (Easter, Passover and Ramadan) create challenges for those who are looking forward to celebrating them in person with friends and family. The availability of vaccination against the virus made it easier to resume the tradition of in-person celebration although the risk of acquiring the infection can be high in some situations.

 

HNCA Kitchen: New Recipes for Head and Neck Cancer Patients and Survivors

Enjoy these new recipes recently added to our online archive!

Guava Ginger Smoothie

Vegan Soup

Spiced Orange Granita

Butternut Squash Soup with Healing Herbs

Golden Milk Smoothie

 
 
 
What's New in Clinical Trials and Research Studies
*Sponsor Content | Learn HNCA's stance on corporate support below.

HNCA’s work would not be possible without our sponsors and partners. Please see below to learn more about our partners and the clinical trials that are underway to help head and neck cancer patients. For more information about clinical trials and where to find trials that might apply to you or a loved one, visit our Clinical Trials page.

 
 
 

Rakuten Medical’s global Phase 3 multi-center clinical trial with ASP-1929 to evaluate its efficacy and safety in patients with recurrent head and neck squamous cell carcinoma. ASP-1929 photoimmunotherapy is a combination drug and device anticancer treatment that utilizes a cetuximab monoclonal antibody conjugated to a photoactivatable dye that can be excited upon localized nonthermal 690 nm red light illumination to induce rapid cell death of target tumor cells. In the ASP-1929-301 study, enrolled patients will be randomized in a 2:1 fashion to receive either ASP-1929 photoimmunotherapy or physician’s choice standard of care (methotrexate, docetaxel, paclitaxel or cetuximab). The study is actively enrolling in 3 regions: Taiwan, Japan and the United States.

 

ClinicalTrials.gov Identifier: NCT03769506

 
*Statement on Sponsor Content and Corporate Support: The information published on this website and in our materials is intended to educate you about Oral, Head and Neck Cancer. The content is not intended to take the place of a discussion with a qualified physician who is familiar with your medical situation. It is important to remember that each individual is different, and the reasons for—and outcomes of—any treatment plan depends on the patient's individual condition. If you have questions or concerns after reading any information on this website or in our materials, you should discuss them openly and honestly with your physician. Any products and manufacturers included on this site are presented for informational purposes only and do not constitute product approval or endorsement by HNCA. The content provided by HNCA is in no way intended to be a substitute for medical consultation with a qualified professional. HNCA encourages those using its resources to be careful when evaluating medical information or products. If you are unsure about your medical condition, consult a physician. Funding from our corporate partners supports HNCA’s programs and educational initiatives, and HNCA maintains independence in its design of programs, content, and initiatives.
 
 

Thank You to our Corporate and Community Partners

 
 
 
 

Head and Neck Cancer Alliance
PO BOX 21688  | Charleston, South Carolina 29413
866-792-4622 | info@headandneck.org

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