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Head and Neck Network's Posts (228)

Last week we suggested you create your own survivorship plan. You can do this by access the OncolLife link here. https://oncolife.oncolink.org/form/oncolife_v11/ One of our members tried it out and shares some of his experience here. 

After completing the plan it seems I have already experienced a lot of the late onset side effects.  I was never given much information on what to expect other than regular tooth care and to use GC Tooth Mousse after brushing my teeth.  Having read through the aftercare section I could be paranoid but I show several symptoms of hyperthyroidism.  I also have problems in certain shops where the lighting makes it difficult to focus on things, once out of the shop my eyesight is fine.  My wifre  and I plan to raise these matters with my GP. 

The OncolLife survey, (17 pages) is a great place to start a conversation with the a GP or clinical specialist. It gives you the language and the international standard of care you should be receivingin your follow up care.

If you have not taken the survey, which creates you a personalised survivorship plan, have a go today. https://oncolife.oncolink.org/form/oncolife_v11/ 

Please share your thoughts and experiences in the comments box below.

Thank you to the member who kindly shared his experience. We can all learn from it. 

 

Read more…

Wednesday Weekly 15 August 2018

Treating Head and Neck Cancer: The Power of a Multi-Specialty Team and Staying Informed

At the 2017 ASCO meeting in Chicago, Host Andrew Schorr chats with head and neck cancer expert Dr. Ezra Cohen. They talk about updates for patients at this year's conference. Dr. Cohen is the Associate Director of the Moores Cancer Center. He is also a Professor of Medicine at UC San Diego Health. Dr. Cohen says that researchers have realized that there are two types of head and neck cancer. One that is associated with tobacco primarily. The other being associated with human papillomavirus (HPV). This discovery will help create better defined treatments for both types of head and neck cancer. Dr. Cohen relays encouraging news from the meeting. Now there are newly approved immunotherapy treatments for patients with head and neck cancer. There is greater prevention through vaccination. Therapies are being refined. There are benefits for patients of a multi-disciplinary team for treatment. Read more and watch the video (4 min) here....

 

Monitoring tool lowers symptom severity for head, neck cancer

Patients with head and neck cancer who underwent remote monitoring by a mobile app and sensor technology had less severe symptoms than patients who had weekly doctor visits, according to a study scheduled for presentation at the ASCO Annual Meeting.

Both cancer- and treatment-related symptoms appeared less severe among the technology-monitored group. Clinicians detected concerning symptoms early and responded to them more rapidly.

Read more...

 

 

 

 

AI Designs Radiation Therapy Treatment Plan For Cancer In Twenty Minutes

A new artificial intelligence (AI) tool developed by a team at the University of Toronto may be able to significantly reduce the time needed to develop radiation therapy treatment plans for people with cancer.

The research published in the journal Medical Physics used AI to mine historical radiation therapy data and designed algorithms to develop recommended treatment strategies. To check the AI-produced relevant treatment plans, the researchers looked at 217 patients with head and neck cancer who had their radiation therapy schedules developed via conventional methods. The plans were comparable. Read more...

Read more…
Network News
 
The Network is in a process of renewal. We have joined with Volunteering Auckland to help strengthen our work with volunteers. We have many supporters throughout New Zealand. Everyone is making a valuable contribution towards our aims. With the help of volunteers we connect, support and advocate for New Zealanders affected by head and neck cancer.
 
Working with Volunteering Auckland we are ensuring all our volunteers are well supported. We are mindful to create safe environments for both volunteers and patients+ (caregivers, and family/whanau). There will be more news as we advance our plan.
 
If you would like to take on the role of a Network Volunteer, please contact us headandnecknetwork@gmail.com. We are looking for people to work as connectors, supporters, advocates, and in governance roles.
 

Upcoming Events
We are adding an Upcoming Events section to our Home page. This will make it easier for you to know what events are taking place near you. If you have an event
 we are very happy to add it to the list. Just email us. headandnecknetwork@gmail.com
 
 
 
 
 
 
 
Auckland/Northland Service Improvement
 
We are continuing our work with the Auckland/Northland service. Thank you to everyone who filled out our Annual Survey, as this is good quality information to share in our work on service improvement. If you want to add your thoughts you can do so here. https://www.surveymonkey.com/r/2018HNCSN
 
HNC Patient Book - Order your FREE copy now! 
The 2018 Second Edition of the Australian Head and Neck Cancer Patient & Carers Book was launched in July 2018 at the ANZHNCS Conference in Melbourne. The book is a patient led initiative coordinated by former patient and Beyond Five Ambassador, Julie McCrossin, and fellow former patient Marty Doyle, coordinator of the Head and Neck Cancer Patient Support Group in Queensland.

The book shares many personal head and neck cancer stories from patients, family and carers from all over Australia and New Zealand. In addition, the book highlights some of the people who work in the head and neck multidisciplinary team who talk about important aspects of care at specific points in the head and neck cancer journey.

To order FREE hard copies of the 2018 Australian issue email: juliemccrossin@bigpond.com or text 0408 699 166 (text messages only please) or to download an e-copy visit: http://ow.ly/W40I50ib3LS Back to top. 
 

Did you request a treatment plan? Just ask #justask

You may not be aware that you can ask for your treatment plan options in writing. The New Zealand Patient Code of Rights sates in Right 6 (4) Every consumer has the right to receive, on request, a written summary of the information provided. Good decisions about treatment are a result of good information provided to the patient and their caregivers, family/whanau. So it is useful to have something to take away from a clinical consultation and share with your support team. 

The ASCO Value in Cancer Care Task Force suggests patients need an understanding of the possible clinical benefits and harms of treatment options available to them. For some this will include the financial aspects of their decision making. Some patients may choose private treatment, and are willing or able to bear those costs. So if you are facing treatment, remember just ask for a written summary.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5015427/

Didn't receive a survivorship plan following treatment?

Well, there is now the technology to create your own. I highly recommend completing the ONCOLIFE survey. At the end of it you will receive a survivorship plan tailored to your particular situation. You can use that plan to manage your own care, and converse with your health professionals. It is a wonderful tool.

If you want to know some more about the research behind patient driven survivorship plans you can read this article or simply enjoy this little bit of it. prom-153919-patient-reported-outcomes-in-head-and-neck-cancer-prospecti-072618.pdf

For head and neck cancer in particular, the incorporation of Patient Reported Outcomes (PROs)has been appreciated by physicians to enhance their assessment of late symptoms. However, knowledge is only one aspect of survivorship, as an actionable plan to maximize posttreatment quality of life and function is the end goal. On the surface Survivorship Care Plans (SCPs)appear a natural offshoot of normal postoncological treatment follow-up. There are many resources available such as the National Comprehensive Cancer Network clinical practice guidelines that provide advice on posttreatment management such as disease surveillance intervals and screening modalities;1 however, such guidelines do not emphasize toxicity management or psychosocial aspects of survivorship. This is where incorporation of PROs into SCPs can lead to follow-up plans tailored to the survivor.

LIVESTRONG Care Plan Click the link here to create your own care plan.https://oncolife.oncolink.org/form/oncolife_v11/

 
Annual Appeal to our Supporters
 
This is also the time of year we reach out to our community for support for the year ahead.
 
The Network mission is to ensure no one should face head and neck cancer alone. The Network connects many people around New Zealand affected by head and neck cancer. We provide patients, caregivers, and family/whanau with support resources. We encourage patients to support each other and share experiences. We provide posters, cards, leaflets, and other resources to support our vision.
We ask you to donate to our Network to fund the year ahead. We need $3500 each year to carry out our work. Last year we raised $1500 from our annual appeal. You can give to the Network through Give a Little or depositdirectly to our bank account. https://givealittle.co.nz/donate/org/headandnecknetwork
 
We thank you for your support and look forward to another year of our work to connect, support and advocate for those affected by head and neck cancer.
 
Latest News from Head and Neck Cancer from around the world
 
 
 

Mercy Ascot Team Lead the Way

MercyAscot Head and Neck Service proudly hosted an engaging education event for GPs, ‘Early diagnosis and Post-Operative Care of Head and Neck Cancer’ on Monday, July 23.

A number of…

Read more…

 

 

Dr. Katzel on Why Women With Head and Neck Cancer are Undertreated

Some answers on why women with HNC receive less treatment than men.…

Read more…
 
Diana Ayling,
Chair Head and Neck Cancer Support Network
Read more…

Facts on Friday 10 August 2018

Mercy Ascot Team Lead the Way

MercyAscot Head and Neck Service proudly hosted an engaging education event for GPs, ‘Early diagnosis and Post-Operative Care of Head and Neck Cancer’ on Monday, July 23.

A number of speakers presented including surgeons in the Head and Neck Service and staff from the multidisciplinary post-operative support team (nursing, surgical care, medication, speech/swallowing/language therapy, diet and physiotherapy management). 

GPs also heard from a cancer patient survivor who told his story and spoke about the important role of the patient in early diagnosis which results in a better outcome.

The programme line-up gave the GPs a great insight and overview into ‘how to avoid missing cancer in the head and neck’ to ‘helpful tips for managing post-operative care for their patients’. This made for a particularly interesting and engaging event. 

Nearly 70 GPs attended, along with a great representation of MercyAscot staff.

Read more…

Head and Neck Cancer Latest News

We curate the lastest news in head and neck cancer for you.

Dr. Katzel on Why Women With Head and Neck Cancer are Undertreated

Some answers on why women with HNC receive less treatment than men.

Small molecule inhibitor appears effective, safe for advanced head and neck cancer

An experimental therapy demonstrated promising efficacy when evaluated in a small cohort of patients with advanced head and neck squamous cell carcinoma, according to results of an open-label dose escalation study.

A majority of patients treated with AZD1775 (AstraZeneca) — a highly selective small molecule inhibitor of the WEE1 kinase — underwent successful surgery. Read more...

Experimental treatment uses modified stem cells to fight cancer

(CNN Money) -- A clinical trial run by UCLA is testing a potentially pioneering form of immunotherapy that could turn a patient's own body into a powerful weapon against cancer.

Researchers at the university's Jonsson Comprehensive Cancer Center are reinforcing the immune system's foundation by genetically modifying bone marrow stem cells, the cellular factories that power immune responses. By arming those cells with receptors that recognize cancer, researchers hope a patient's body will cure itself from the inside out. Read more...

Read more…
 
 
Network News
 
The Network is in a process of renewal. We have joined with Volunteering Auckland to help strengthen our work with volunteers. We have many supporters throughout New Zealand. Everyone is making a valuable contribution towards our aims. With the help of volunteers we connect, support and advocate for New Zealanders affected by head and neck cancer.
 
Working with Volunteering Auckland we are ensuring all our volunteers are well supported. We are mindful to create safe environments for both volunteers and patients+ (caregivers, and family/whanau). There will be more news as we advance our plan.
 
If you would like to take on the role of a Network Volunteer, please contact us headandnecknetwork@gmail.com. We are looking for people to work as connectors, supporters, advocates, and in governance roles.
 

 

Upcoming Events

We are adding an Upcoming Events section to our Home page. This will make it easier for you to know what events are taking place near you. If you have an event we are very happy to add it to the list. Just email us. headandnecknetwork@gmail.coming Events
 
 
 
 
 
Auckland/Northland Service Improvement
 
We are continuing our work with the Auckland/Northland service. Thank you to everyone who filled out our Annual Survey, as this is good quality information to share in our work on service improvement. If you want to add your thoughts you can do so here. https://www.surveymonkey.com/r/2018HNCSN
 
 

Did you request a treatment plan? Just ask #justask

You may not be aware that you can ask for your treatment plan options in writing. The New Zealand Patient Code of Rights sates in Right 6 (4) Every consumer has the right to receive, on request, a written summary of the information provided. Good decisions about treatment are a result of good information provided to the patient and their caregivers, family/whanau. So it is useful to have something to take away from a clinical consultation and share with your support team. 

The ASCO Value in Cancer Care Task Force suggests patients need an understanding of the possible clinical benefits and harms of treatment options available to them. For some this will include the financial aspects of their decision making. Some patients may choose private treatment, and are willing or able to bear those costs. So if you are facing treatment, remember just ask for a written summary.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5015427/

Didn't receive a survivorship plan following treatment?

Well, there is now the technology to create your own. I highly recommend completing the ONCOLIFE survey. At the end of it you will receive a survivorship plan tailored to your particular situation. You can use that plan to manage your own care, and converse with your health professionals. It is a wonderful tool.

If you want to know some more about the research behind patient driven survivorship plans you can read this article or simply enjoy this little bit of it. prom-153919-patient-reported-outcomes-in-head-and-neck-cancer-prospecti-072618.pdf

For head and neck cancer in particular, the incorporation of Patient Reported Outcomes (PROs)has been appreciated by physicians to enhance their assessment of late symptoms. However, knowledge is only one aspect of survivorship, as an actionable plan to maximize posttreatment quality of life and function is the end goal. On the surface Survivorship Care Plans (SCPs)appear a natural offshoot of normal postoncological treatment follow-up. There are many resources available such as the National Comprehensive Cancer Network clinical practice guidelines that provide advice on posttreatment management such as disease surveillance intervals and screening modalities;1 however, such guidelines do not emphasize toxicity management or psychosocial aspects of survivorship. This is where incorporation of PROs into SCPs can lead to follow-up plans tailored to the survivor.

LIVESTRONG Care Plan Click the link here to create your own care plan. https://oncolife.oncolink.org/form/oncolife_v11/

 
Annual Appeal to our Supporters
 
This is also the time of year we reach out to our community for support for the year ahead.
 
The Network mission is to ensure no one should face head and neck cancer alone. The Network connects many people around New Zealand affected by head and neck cancer. We provide patients, caregivers, and family/whanau with support resources. We encourage patients to support each other and share experiences. We provide posters, cards, leaflets, and other resources to support our vision.
We ask you to donate to our Network to fund the year ahead. We need $3500 each year to carry out our work. Last year we raised $1500 from our annual appeal. You can give to the Network through Give a Little or depositdirectly to our bank account. https://givealittle.co.nz/donate/org/headandnecknetwork
 
We thank you for your support and look forward to another year of our work to connect, support and advocate for those affected by head and neck cancer.
 
The People of our Network
 
Our Network continues to grow. We are New Zealand focused, and welcome new folk from around the world. We are all connected by our head and neck cancer experiences. We are delighted to have 984Twitter followers, 170 website members, and 556 LinkedIn contacts. If you want to connect with us through any of these channels you can do so here. Our website, http://headandneck.org.nz/, Facebook Page, Twitter, https://twitter.com/HeadNeckNZ, LinkedIn, https://www.linkedin.com/in/headnecknz/ 
 
New Members
 
We welcome to our Network...
 
Some of the new folk, will be in your area.  As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. Don't forget our Groups. We have something for everyone, and you can add a comment in the Forum to make contact with the members of your group.
 
Most Popular Posts - 
 
 
 
2. The campaign to raise awareness of World Head and Neck Cancer Day http://headandneck.org.nz/news/tongueoutforcancer
 
 
 
Diana Ayling,
Chair Head and Neck Cancer Support Network
Read more…

HNC News from New Zealand and around the world.

 From Medicines New Zealand

New Zealand’s Medicines Waiting List: International disgrace for patient equity

12 July 2018

The medicines waiting list grows to over 100 priority medicines that wait to be publicly funded by PHARMAC. All medicines on this list have been recommended to benefit patients and New Zealand’s healthcare system by PHARMAC’s own technical advisory board.

The medicines waiting list has grown from 86 medicines in 2017 to 103 medicines in 2018.

"It shows that PHARMAC are ignoring recommendations from their own specialist advisory board. New Zealand patients are missing out on over 100 medicines that could provide better treatment for cancer, diabetes, arthritis and many other chronic diseases,” says Dr Graeme Jarvis, General Manager of Medicines New Zealand.

A quarter of a million patients were waiting for a third of the medicines on the previous list. Patients are hamstrung by decision delays as some medicines have been on this list for almost 14 years.

"The government needs to start funding the priority medicines that have been sidelined for years. The growth of this waiting list is an international disgrace for patient equity in New Zealand,” says Dr Jarvis.

New Zealand’s lack of access cripples the advantages of on-flowing benefits medicines can provide. Lower hospitalisation rates and better patient outcomes reduce the costs downstream for the health system. 

"Saying there is a lack of information or clinical data to progress the funding applications for these medicines is a weak excuse. This is the same clinical data that is provided to over 45 countries who already fund these medicines,” says Dr Jarvis.

PHARMAC's budget has been increased to a record level of $984million for 2018/19.

"Clearing the backlog of medicines on the waiting list should be this government’s priority,” says Dr Jarvis. You can access the report here.

Is your cellphone giving you cancer? A comprehensive guide to the messy, frustrating research.

“Get that thing off your skull.”

That’s something my mom says just about every time she sees me with a cellphone pressed against my ear. She also worries about cellphones in pockets, telling my brothers that they’re “frying their testicles” with their devices.

My mother is voicing something many cellphone users, or parents of cellphone users, intuitively feel: that these devices are somehow making us sick.

Though I have never been particularly concerned about cellphone radiation and cancer, my phone makes me uneasy. It commands too much of my attention. It sucks up too much of my time. And it feels unwise to have its heat so close to my brain. Read more....

Read more…
Annual Appeal to our Supporters
 
 
This is also the time of year we reach out to our community for support for the year ahead.
 
The Network mission is to ensure no one should face head and neck cancer alone. The Network connects many people around New Zealand affected by head and neck cancer. We provide patients, caregivers, and family/whanau with support resources. We encourage patients to support each other and share experiences. We provide posters, cards, leaflets, and other resources to support our vision.
We ask you to donate to our Network to fund the year ahead. We need $3500 each year to carry out our work. Last year we raised $1500 from our annual appeal. You can give to the Network through Give a Little or deposit directly to our bank account. https://givealittle.co.nz/donate/org/headandnecknetwork
 
 
World Head and Neck Cancer Day 2018

 
 
 
Another fabulous week of events and stalls. Thank you to everyone who did a little bit to make the week so successful. We met our objectives to raise awareness of HPV vaccination and signs and symptoms of head and neck cancer. 
 
 

 
 
 
 
 
Network News
 
Our Network is undergoing change. We have grown and expanded our activities throughout New Zealand. We need a more sustainable model to ensure we can continue to connect, support and advocate for New Zealanders affected by HNC. We have a strong financial position and we can continue to comfortably operate for the next three years. We want to ensure the Network will have strength and future beyond 2020.
 
We are seeking expressions of interest in volunteering in governance and support roles. We will have more details available soon. We are working with Volunteering Auckland to ensure we have the right people in the right roles. If you have a friend, relative or you feel you can bring strategic thinking skills to the governance of our Network, please contact us. headandnecknetwork@gmail.com
 
Our Network is made up of our Website - Headandneck.org.nz, our Facebook page, https://www.facebook.com/headnecknz/ Twitter channel @HeadNeckNZ, and LinkedIn site https://www.linkedin.com/in/headnecknz/.
 
We are considering opening up a Forum on our website for members to discuss effects of head and neck cancer. If you are interested in helping with this, please let us know.
 
Maureen Jansen, Network founder and former secretary is leaving our committee/board. Maureen joined the Auckland Support Group in 2014. She took on the role as minute taker. Later she become the first Secretary of the Network. She was a contributor to the website in her role as Thursday Investigator. Her first post can be found here. http://headandneck.org.nz/news/thursday-investigator.
In a two part story Maureen explored the process of Hyperbaric Oxygen Therapy. Her most read post was http://headandneck.org.nz/news/what-is-osteoradionecrosis-and-how-do-we-deal-with-it. These are great resources for people affected by HNC. We thank Maureen for all her hard work building the Network. She has connected with many of you both in New Zealand and overseas.
Maureen has a new house and is moving on to other projects. She will stay on as a supporter of people affected by HNC with her Facebook Group (Head and Neck Support Aotearoa), and her work in Auckland with the support group. Maureen is a key contributor to the Auckland/Northland Implementation Project. A big thanks to Maureen.
 
Auckland/Northland Service Improvement
 
Thank you to those you gave feedback on the Multidisciplinary Meeting experiences. We have collated the feedback. In the later part of the year a working group will be working on improving this aspect of the service.
We continue to work on a range of aspects of the service. This includes:
- the Model of Care,
- compliance with the Patient Code of Rights and
- provision of allied health services.
 
Auckland August meeting 
 
Dr Wilbur Familo, is the Clinical Lead, Northern Region Integrated Cancer Services, Northern Regional Alliance. He will speak about his role in the Auckland/Northland Review of Head and Neck Cancer Services. This includes the implementation in the recommendations from that process. You can find out more at this link.http://headandneck.org.nz/upcoming-events/auckland-meeting-august-2018
 
You can read about the excellent presentation at our July meeting. Juliet Ireland, from the ADHB spoke about the need for social support for people affected by head and neck cancerhttp://headandneck.org.nz/news/juliet-ireland-talks-to-auckland-meeting
 
If you know of HNC events around New Zealand be sure to let us know so we can publicise them through our regional groups.

 
 
Annual Survey
 
We are currently seeking your views on the provision of head and neck cancer services in New Zealand. Our Annual Survey is open. You are most welcome to share your thoughts on your treatment, care and support. 
 

Please take the survey titled "[2018] New Zealand Head and Neck Cancer Survivor's Support Network - Patient+ Annual Survey". Your feedback is important!

Every year we survey our Patients and their caregivers, and family/whanau. We want to take the temperature of our members and their experience as people affected by head and neck cancer. This year we are inviting you to do this during the week of World Head and Neck Cancer Day. We use the information provided from the annual survey to inform our work to connect, support and advocate for New Zealanders affected by head and neck cancer. This year the annual survey is open until 31 July 5pm. You can view the results at the end of August at http://headandneck.org.nz/annual-patient-survey A summary of the 2017 data is available there. 

Click the link below to open the Annual Survey

https://www.surveymonkey.com/r/2018HNCSN

 

The People of our Network
 
Our Network continues to grow. We are New Zealand focused, and welcome new folk from around the world. We are all connected by our head and neck cancer experiences. We are delighted to have 984 Twitter followers, 170 website members, and 556 LinkedIn contacts. If you want to connect with us through any of these channels you can do so here. Our website, http://headandneck.org.nz/, Facebook Page, Twitter, https://twitter.com/HeadNeckNZ, LinkedIn, https://www.linkedin.com/in/headnecknz/ 
 
New Members
 
We welcome to our Network...
 
Some of the new folk, will be in your area.  As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. Don't forget our Groups. We have something for everyone, and you can add a comment in the Forum to make contact with the members of your group.
 
Most Popular Posts - 
 
 
 
2. The campaign to raise awareness of World Head and Neck Cancer Day http://headandneck.org.nz/news/tongueoutforcancer
 
 
 
Diana Ayling,
Chair Head and Neck Cancer Support Network
Read more…

We are joining Volunteering Auckland. We plan to have a network of supporters throughout New Zealand to help us live our vision of connecting, supporting and advocating for New Zealanders affected by head and neck cancer.

Volunteering Auckland can help us:

  • Develop volunteer programmes through training, consultancy and support services.
  • Recruit volunteers through their recruitment and referral service.
  • Developing our team by organising seminars, networking forums and events.  Their programmes cover all aspects of volunteering and related topics.

More details on how this will affect the operation of the Network coming soon.



Read more…

World Head and Neck Cancer Day 2018

The Head and Neck Cancer Support Network is a voluntary organisation. The Network provides connection, support and advocacy for New Zealanders affected by head and neck cancer. At this time of year, we recognise World Head and Neck Cancer Day. #WHNCDay2018  #HNCA #headneckNZ
 
In 2015 the International Federation of Head and Neck Oncologic Societies ­(IFHNOS) proclaimed July 27th as “World Head and Neck Cancer Day.”
 
The announcement on Sunday, July 27th 2015 kicked off the World Congress of Head and Neck Cancer. IFHNOS and AHNS worked together to celebrate the 100-year anniversary of the first head and neck cancer surgery service. This service began at Memorial Sloan Kettering Cancer Center. The opening session included remarks from former President Bill Clinton. Actor and producer, Michael Douglas spoke at the meeting attended by experts in head and neck cancer. From this a world wide recognition of 27 July as World Head and Neck Cancer Day began.
 
In 2018 in New Zealand we have events raising awareness of head and neck cancer in the community. The Network has chosen to highlight the vaccination of boys/men for the HPV virus. We are working to educate the public about the signs and symptoms of head and neck cancer. We have distributed our poster nationwide. A number of our members have participated in education events and spoken with the media. We thank everyone for their contribution.
 
 
 
This is also the time of year we reach out to our community for support for the year ahead.
 
The Network mission is to ensure no one should face head and neck cancer alone. The Network connects many people around New Zealand affected by head and neck cancer. We provide patients, caregivers, and family/whanau with support resources. We encourage patients to support each other and share experiences. We provide posters, cards, leaflets, and other resources to support our vision.
 
We ask you to donate to our Network to fund the year ahead. We need $3500 each year to carry out our work. Last year we raised $1500 from our annual appeal. You can give to the Network through Give a Little or deposit directly to our bank account.
 

 

 
We thank you for your support and look forward to another year of our work to connect, support and advocate for those affected by head and neck cancer.
Read more…

HNC News 24 July 2018

Three Articles from the Head and Neck Cancer News

The Caregivers' Cancer Journey

 

As patients with cancer complete their active treatment phase, many are faced with new and often unanticipated challenges as they transition into survivorship. Many are managing ongoing or long-term physical side effects of treatment, experiencing anxiety about disease recurrence, navigating sometimes bumpy returns to work or school, and digesting the reality of the cancer diagnosis itself — the full scope of which can have emotional reverberations impacting life goals and sense of purpose. It is typically a period of great change for the cancer survivor.1 But what about that person's loved ones? How do caregivers experience survivorship with its many challenges and unknowns? Read more...

 

 

The genes that may predict cancer survival

In the eighth of a series of interviews with young and mid-career researchers, Eloise Gibson talks to Francis Hunter about the search for new cancer drugs, and genes that may determine whether someone survives cancer if they get it.

Scientists have a list of genes they know can be involved in determining whether a person gets cancer. But what may surprise people is that there are other genes that researchers believe may help determine whether someone with cancer survives the disease.

These genes – and how they function - may help determine whether someone’s cancer is susceptible to traditional treatments such as radiotherapy or chemotherapy, which in turn may help explain the huge disparity in outcomes for people with the same disease.  Read more...

 

Nivolumab shows antitumor activity in nasopharyngeal carcinoma

Nivolumab showed promising clinical activity among patients with pretreated recurrent or metastatic nasopharyngeal carcinoma, according to data published in Journal of Clinical Oncology.

“Nasopharyngeal carcinoma is endemic to parts of Asia and North Africa and is etiologically associated with the Epstein-Barr virus,” Brigette B.Y. Ma, MD, professor in the department of clinical oncology at Chinese University of Hong Kong, and colleagues wrote. “This virus-associated cancer represents the archetypal ‘inflamed tumor,’ which often exhibits a dense lymphocytic infiltrate and increased programmed death-ligand 1 (PD-L1) expression.”

In this phase 2, single-arm study, researchers assessed nivolumab (Opdivo, Bristol-Myers Squibb) monotherapy in 45 patients (median age, 57 years; 77.8% men) with recurrent or metastatic nasopharyngeal carcinoma. All patients had received at least one prior line of platinum-based chemotherapy. Read more...

Read more…

Please take the survey titled"[2018] New Zealand Head and Neck Cancer Survivor's Support Network - Patient+ Annual Survey". Your feedback is important!

Every year we survey our Patients and their caregivers, and family/whanau. We want to take the temperature of our members and their experience as people affected by head and neck cancer. This year we are inviting you to do this during the week of World Head and Neck Cancer Day. We use the information provided from the annual survey to inform our work to connect, support and advocate for New Zealanders affected by head and neck cancer. This year the annual survey is open until 31 July 5pm. You can view the results at the end of August at http://headandneck.org.nz/annual-patient-survey A summary of the 2017 data is available there. 

Click the link below to open the Annual Survey

https://www.surveymonkey.com/r/2018HNCSN

 

Read more…

#tongueoutforcancer

#tongueoutforcancer

Here is a way you can acknowledge International Head and Neck Cancer Day in a creative way.

The New Zealand Head and Neck Cancer Foundation has initiated a  ‘tongues out’ selfie campaign to raise  awareness of Head and Neck Cancer.

More than just a selfie, I’m doing my bit for Head & Neck Cancer Day.

Cancer affects anyone and everyone, whether it be you personally, or a loved one.

Join us  Friday 27 July International Head and Neck Cancer Day by showing us your tongue shot on social media to raise awareness for #HNC    #tongueoutforcancer

Read more…

The latest news from around the world and close to home....

How to survive survivorship

It started with a lump in my throat.

I don't mean the metaphorical lump, the kind that comes when you're feeling a rush of emotion and trying to hold back tears. I mean literally.

One day nearly a year ago I noticed that there was a lump on the right side of my neck that wouldn't go away. 

Even now after writing that sentence my hand reaches for that spot, a leftover instinct borne from weeks of checking to see if it was still there and always finding that unnatural bump. I didn't think much of it, until it was all I could think about. Read more...

 

 

Canopy TV

Auckland based Canopy Cancer Care launch their Canopy TV intiative for people affected by cancer. 

https://www.canopycancercare.co.nz/canopytv

 

 

Simple test to predict likely spread of rare cancer

July 6, 2018, Queensland University of Technology

New QUT research has shed fresh light on how head and neck cancer spreads to other organs and researchers are developing a simple blood test to tell doctors which patients are at risk of spread long before conventional imaging can.

 

Doctors, cancer researchers and medical industry representatives from around the world are attending the symposium to share their latest findings and technology in relation to a 'liquid biopsy' – the use of saliva or blood for the non-invasive diagnosis of disease. Read more...

Understanding metastatic cancer

 Cancer is a disease characterised by the uncontrolled division of abnormal cells. It usually develops at a single site initially, and it may display metastatic symptoms at a later stage. During metastasis, cancer cells break away from the tumour in the primary site and travel to other parts of the body through the bloodstream or the lymphatic system. Though they can be controlled, metastatic cancers require aggressive treatment as the cancer cells can be widespread, explains Dr N. Jayalatha, the director of the MNJ Institute of Oncology and Regional Cancer Centre. Read more....

 

 

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Head and Neck Cancer News

....From around the world, and closer to home, some of the top stories this week.

GP's plea to parents: save your kids from disfiguring cancer

Cases of head and neck cancer are increasing at a faster rate than other cancers, yet a cure for one of the causes is being turned down too often, according to Whangarei doctor Andrew Miller.

In younger patients especially, HPV infection has recently emerged as an important cause of what can be a disfiguring disease.

HPV immunisation, which is funded for everyone aged between the ages of 9 and 26 - eliminates that risk, as well as the risk of cervical, anal cancer, vaginal cancer, & vulvar cancer.

Dr Andrew Miller is a GP and works for Northland DHB as a Sexual Health Medical Officer.

He is also recovering from stage 4 HPV related head and neck cancer. He describes his type of cancer as particularly awful, as it can often result in facial reconstruction with a complex series of treatment and recovery.

He tells Lynn Freeman that immunisation is a 'no brainer'.

Listen here.

How many children are missing out on HPV vaccine?

Listen to the Minister of Health on Nine to Noon.

 

The Project talks to Dr Lance O'Sullivan about HPV vaccination

Watch here

Health bungle: Patients left off surgical waiting lists

People needing surgery were mistakenly left off waiting lists at one of the country's biggest DHBs - an oversight only discovered when one of them queried their case.

Forty-four Auckland Hospital patients were caught up in the error, the Herald can reveal.

Auckland DHB only realised there was a problem when one of the affected patients contacted them about their Read more....

 

Multi-Flap Head and Neck Surgery: It's Complicated

Need for individualized assessment, discussion emphasized by meta-analysis

Multi-flap reconstruction after surgery for head and neck cancer led to "modest" functional and aesthetic improvement and high complication rates and costs, a meta-analysis of 24 published studies showed.

Substantial proportions of patients remained partly or fully dependent on feeding tubes at follow-up, had poor oral competence associated with drooling, or unintelligible speech. A subgroup of evaluable patients had a mean hospital length of stay exceeding 3 weeks, and more than 70% of evaluable patients had minor or major complications.

Read more....

 

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HNC folk have a better quality of life with social support

The fear factor, and the surprise of distress in cancer were themes explored by Juliet Ireland, National Clinical Lead, Cancer psychological & social support initiative at the Auckland Support Group meeting.  Juliet pointed out that any talk of cancer has a perception of "bad" news. This perception can be overwhelming and shocking. It has a multi dimensional effect of each person in a different way. A cancer diagnosis affects the patient's family, friends and work place.

The "unknowns" of cancer create uncertainty which can increase distress. The distress overload can occur at anytime on the treatment journey. Juliet explained it it normal to feel distress. The feeling of distress increased during times of change. Everything become harder when we are distressed. 

The "good" news is that social support can give emotional, practical and educational support. Juliet recommends seeking support from the Cancer Society, or alternatively speak to your specialist, cancer care nurse or general practitioner.

Juliet's presentation is included below. 

Beyond the physical Head and Neck Group July 2018 for the group (1).pdf

Juliet provided some tips for distraction exercises.

Distraction exercises (1).pdf

 

Read more…

What are you doing for WHNCD?
As WHNCD approaches on 27 July let us know what you’re doing in your local community so we can help promote WHNCD activities and raise awareness of head and neck cancer in New Zealand.

Whether it’s a public screening clinic or an information stall during the week, email the details and we’ll share them with our supporters on Facebook, Twitter, LinkedIn and our website.

WHNCD Resources - order now

The Head and Neck Cancer Survivor's Support Network has the following resources available to help promote #WHNCD #HNCand  #HNCNZ. To order download the Resource Order Form and return to email us

  • WHNCD Poster
  • Head and Neck Cancer Awareness Ribbons
  • Head and Neck Cancer Support Network Cards
  • Head and Neck Cancer Support Network Leaflets

23 July 2018 General Practitioner Education Event at Mercy Ascot. More details to follow.

25 July 2018 Information Stall at Auckland City Hospital Level 5.

27 July 2018 World Head and Neck Cancer Day. 

Read more…

Three articles from the Head and Neck Cancer news from around the world. 

 

STV presenter David Cowan opens up about cancer battle after getting all-clear
 

Two weeks ago, TV journalist David Cowan had one of the best meals of his life – fish and chips – to celebrate the all-clear from cancer.

During treatment to tackle the disease in his tonsils, he was fed through a tube and radiation robbed him of taste.

Food became the stuff of fantasy.

David said: “I always said, if I was going to get shot at dawn tomorrow, my last meal would be a fish supper. All the way through treatment, that’s what I thought about. Read more....

 

WENY News - Hospital gives people the chance to try out surgical robot
"With the robot, we have magnification, we have the ability to control very steadily all tissue plains," said otolaryngology/head and neck cancer ...
 

     SAYRE, PA (WENY) -- The Di Vinci surgical robot was on display Thursday at Guthrie for people to try their hand at the machine and talk to the surgeons who use it on a daily basis.

    "In particular, we utilize the Di Vinci system for the treatment of rectal cancer and colon cancer," said Guthrie colorectal surgeon, Michael Barrett, MD. "The system provides us a great deal of capability as far as visualization and maneuverability of our instruments. It certainly has been shown to give excellent results for colon and rectal cancer."

 

Opinion: Surviving cancer after you've survived cancer

 
It's also heartening to see survivorship practitioners and programs emerging at other cancer centers. Programs like this are highly personalized from ...

It’s your last day of chemo. Surrounded by nurses, you ring a celebratory bell. What a great moment.

A few weeks later, you get a scan and your oncologist’s all-clear: No signs of cancer; see you in six months. It’s time to get back to life as you love it. Nothing could be better.

Anyone who has dealt with cancer will probably tell you this isn’t exactly the experience of a cancer survivor. Certainly, these milestones bring celebration and relief. But there is also a great deal of anxiety, fear and loneliness when you find yourself suddenly no longer under the intense care from the team that saved your life. While friends are happy for you, you feel in limbo. You’re no longer a cancer patient, but you still need specialized care due to the impact of treatment on your body. Read more....

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