Head & Neck Cancer Support Network Trust Community News
Kia ora, after a two-month break, we are back to share the latest news about Head and Neck Cancer from the Aotearoa New Zealand and international perspectives. There is great news about developments in head and neck cancer treatments. Closer to home we have worked hard to bring you new approaches to radiation oncology, optimal cancer care pathways, surgical services and a Rare Disorders Strategy.
We hope that you value and appreciate that we work hard for you and your whānau, and hope that you can support us in our upcoming fundraising.
Unlocking Hope: Recent Advances in Head and Neck Cancer Care through Combination Therapies
We are thrilled to share some remarkable news with you all. PHARMAC has announced it is in consultation for the funding approval for Keytruda (pembrolizumab) for advanced head and neck cancer. This milestone is not only a breakthrough in medical treatment but also a testament to the relentless advocacy and community efforts led by the Head and Neck Cancer Support Network.
The Significance of Keytruda
Keytruda is an immunotherapy drug that has shown promise in treating various cancers by empowering the body's immune system to fight cancer cells. For patients with advanced head and neck cancer, the consultation process for approval of Keytruda funding means access to a treatment that can potentially extend life, improve quality of life, and offer hope where traditional treatments may have fallen short.
The Journey of Advocacy
This achievement did not happen overnight. It is the culmination of persistent advocacy, heartfelt stories, and the unwavering support of our community. Leading the charge in this fight was Diana Ayling, a beacon of hope and resilience for many.
Diana Ayling: A Champion for Change
Diana Ayling has been at the forefront of the Head and Neck Cancer Support Network, dedicating countless hours to advocacy, education, and support for patients and their whānau. Diana's journey began with her own experience with head and neck cancer. Under her leadership, the Support Network has grown into a powerful voice, advocating for policy changes, raising awareness, and providing crucial support services.
The Power of Community
The consultation process and potential approval of Keytruda funding is a victory for our entire community. It highlights the power of collective action and the importance of every voice. Each letter written, each story shared, and each petition signature contributed to this success. It’s a reminder that when we come together, we can achieve extraordinary things.
What This Means for Patients
For those battling advanced head and neck cancer, the funding for Keytruda offers a new lifeline. Patients will now have access to a cutting-edge treatment option that can provide hope and potentially change the course of their illness. This step towards approval represents a significant step forward in the fight against head and neck cancer, offering renewed optimism for patients and their families.
Moving Forward
While we celebrate this victory, our work is far from over. The Head and Neck Cancer Support Network will continue to advocate for better treatments, support services, and awareness. We will keep pushing for advancements that improve the lives of those affected by this disease.
We extend our heartfelt thanks to everyone who has supported this journey. Your dedication, compassion, and perseverance have made this possible. Together, we have shown that our voices matter and that change is possible.
⛯ New Explorers Joining Our Community!
A warm welcome to new members, Samuel Hartman, Danielle Oakes, Mahendra Singh Rawat, Yvette Florian, Shuo Chen, James Storrie and Adrian van der Krogt who have recently joined our community Facebook page, "The Explorers". Your presence enriches our network, bringing diverse experiences and perspectives. We encourage everyone to engage, share stories, and offer support as we navigate this journey together.
The Head and Neck Cancer Support Network is a partner and supporter of Rare Disorders New Zealand. We worked with them to advocate for a Rare Disorders Strategy.
On 25 July 2024 Aotearoa New Zealand’s first Rare Disorders Strategy was released.
Developed by Manatū Hauora | Ministry of Health, the Rare Disorders Strategy is the first high-level, documented intention to improve the health and well-being of people living with a rare disorder and their whānau.
The Strategy also marks the first time Aotearoa New Zealand has a definition of what is considered a rare disorder.
The release of the Strategy marks a significant moment for the rare disorder community and Rare Disorders NZ, who have been advocating for a Strategy for over 20 years. An equitable future for people living with a rare disorder is another step closer.
Download Aotearoa New Zealand Rare Disorders Strategy here.
Download Aotearoa New Zealand Rare Disorders Strategy Context and Evidence (supporting document) here.
Download Aotearoa New Zealand Rare Disorders Strategy Rare Voices and Aspirations (supporting document) here.
Patient Resources
The Head & Neck Cancer Alliance (a USA based organisation) is working to provide webinars focusing on different topics that will help head and neck cancer patients understand what to expect before, during and after treatment and tips on managing side effects from treatment.
https://www.headandneck.org/survivorship-webinars/
Here are some of the recent video resources:
January - Parenting Through A Head and Neck Cancer Diagnosis, Treatment and into Survivorship
- Download Slides Here
May - Head and Neck Cancer: What To Expect the First Year
- Download Resource Slides Here
June - Guiding Light: End Of Life Care For Head and Neck Cancer Patients
- Download Slides Here
🗞️ News: International Head and Neck Cancer
We know that you and your whānau and friends, who share your journey, want to have access to the latest reliable information on head and neck cancer treatment advances. We have created a catalogue of new developments for you to view. We will keep adding to these resources as time goes on. Please feel free to share; there is much advancement in treatments and hope.
United Kingdom patients test personalised mRNA jab for melanoma
The world’s first personalised mRNA cancer jab for melanoma — which also has the potential to stop lung, bladder and kidney cancer — is being tested in British patients.
The jab, which offers hope of a cure, is custom-built for each person in just a few weeks.
It works by telling the body to hunt down cancer cells and prevent the deadly disease from coming back.
Guiding Light: New Advances in Sinonasal Cancer Treatment
This article explores the importance of integrating innovative treatment modalities and leveraging advancements in precision medicine to optimise patient outcomes in managing sinonasal cancers. The multifaceted approach discussed underscores the evolving nature of cancer treatment and the promise it holds for improving patient care in this challenging clinical landscape.
Researchers discover urine-based tests to detect head and neck cancer
Researchers from the University of Michigan Health Rogel Cancer Center have created a urine-based test that detects pieces of DNA fragments released by head and neck tumors. The test could potentially facilitate early detection of this cancer type, which currently does not have a reliable screening method.
💬 Member Chat
This month’s member chat is from one of our New Zealand head and neck community. As a young person they had not encountered the health system before, and they wanted to share their story of their family’s decision to self fund Keytruda.
🌟 A Journey of Hope: Our Family’s Story of Battling Head and Neck Cancer with Keytruda
Name without by agreement.
It all began with a persistent sore throat and difficulty swallowing. Initially, Mum thought it was just a bad cold or flu, but she saw a doctor when the symptoms didn't subside. After a series of tests, including a biopsy, the diagnosis was confirmed: squamous cell carcinoma of the head and neck. We were heartbroken, but we knew we had to act quickly.
Mum went through treatment bravely and we thought we were over the worst. However, Mum’s cancer had spread, and that’s when Keytruda was mentioned. It works by targeting and blocking a protein called PD-1, which helps the immune system recognise and fight cancer cells. The success stories were encouraging, but the cost was overwhelming.
Our family held many discussions, weighing the benefits and financial burden of Keytruda. Mum’s health and quality of life were our top priorities. After much deliberation, we decided to proceed with Keytruda, knowing that we’d have to make significant financial sacrifices. We pooled our resources and reached out to extended family. The response was heartwarming and gave us the strength to move forward.
Mum began her Keytruda treatment shortly after our decision. Each infusion was a reminder of the support and love surrounding her We accompanied her to every appointment providing the emotional support she needed.
As the months passed, we began to see positive changes. Mum’s energy levels improved, and she regained some of the weight she had lost. Scans showed that the tumours were shrinking. It was a beacon of hope in what had been a very dark time.
Throughout this journey, we were reminded of the incredible power of community. Friends, family, and even strangers rallied around us, offering financial support, meals, and words of encouragement. The outpouring of love and generosity was overwhelming and humbling.
Today, Mum is in remission. While the journey is far from over, and we continue to monitor her health closely, we are grateful for every moment we have together. Keytruda has given us hope and more precious time with our mother. Our decision to self-fund his treatment was not easy, but it was the best choice for our family at that time.
Our journey with Keytruda has been one of resilience, hope, and unwavering love. While the road was difficult and fraught with uncertainty, the decision to self-fund Mum’s treatment was ultimately life-saving. We are eternally grateful for the advances in medicines and the support of our community. Together, we fought against cancer, and together, we will continue to cherish every moment we have with our Mother.
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🫶🏽 Community Resources
If you are new to head and neck cancer, or back in treatment, we have a support pack for you. You can find all the details here. https://www.headandneck.org.nz/patient-planner
🫶🏽 Contact us
We welcome contact from our head and neck cancer community, including whānau and friends. Please feel welcome at any of these contact points. https://www.headandneck.org.nz/contact-us
🌟 Our Wish for You
We are thrilled to celebrate PHARMAC’s decision to fund Keytruda, bringing renewed hope to those battling head and neck cancer. This milestone is a testament to the power of advocacy and the importance of accessible treatment options. Additionally, the launch of the new Rare Disorders Strategy by Te Whatu Ora Health New Zealand marks a significant step forward in ensuring comprehensive care and support for individuals with rare conditions, including those affected by head and neck cancer.
These advancements underscore the critical need for continued support and resources for our community. The Head and Neck Cancer Support Network remains dedicated to connecting, supporting, and advocating for those impacted by this challenging disease.
However, our work is far from over. We rely on the generosity of donors to continue our mission. Your contribution can make a tangible difference in the lives of patients and their families, providing them with the support and resources they desperately need.
Please consider donating to the Head and Neck Cancer Support Network today. Together, we can build a future where no one faces head and neck cancer alone.
Donate Now: https://www.headandneck.org.nz/donations
Thank you for your continued support.
Head and Neck Cancer Support Network Trust
