Head and Neck Network's Posts (283)

Volunteering Week 16-22 June

National Volunteer Week 2019

#NVW2019 https://nationalvolunteerweek.nz/

National Volunteer Week celebrates the collective contribution of the 1.2 million volunteers who enrich Aotearoa New Zealand.

National Volunteer Week 2019 runs from June 16-22. This year’s theme is “Whiri Te tangata - weaving the people together". Volunteering, Mahi Aroha and social action weave people together.

This week the Network celebrates our volunteers, and acknowledge their work. We invite more people to join us to advocate, connect and support people affected by head and neck cancer.

INVITATION

If you would like to contribute to the Head and Neck Cancer Support Network, we welcome you. We have a range of tasks at national and local level that bring value to the organisation. Please contact us for more details headandnecknetwork@gmail.com

OUR VOLUNTEERS

Sean Woods, a lary and head & necker on the road shares his volunteering story. 

What do you do as a volunteer?

As a volunteer I talk to people about their journey , most of the time it starts with them asking about my tracheotomy. I also have available pamphlets and business cards which I hand out and encourage them to make contact with our network .

Why do you do it?

To make people aware of Head and Neck Cancer Network. To inform people that they are not alone and there is help out there for everyone

Who do you work with?

Anyone I can , Patients, Family, Nurses, Support Groups, Community Groups and anyone else I come across who needs information about our network

How does that happen?

I have a unique situation as I travel the country for 34 weeks of the year with a travelling fair , so I’m in a different town each week and meeting different people . if there’s a meeting in the town or area we are in I try and attend that as well to see how that area is helping the Head and Neck community and see if they are aware of our network .

What does volunteering do for the Head and Neck Community?

Makes people aware of the Head and Neck community, what’s available, to contact others either through the website or the closed Facebook group. It allows them to ask questions about their journey . Gets our network exposure to the public.

What have you learnt in your volunteer role, and what will you take away from it?

I have learnt not all people ask for help when they should , not all people know or understand what help is out there or where to look for help. A lot of people are shy or embarrassed because of Head and Neck cancer but just because you look different you are still the same person .

If one person takes a pamphlet or business card and asks for help or gets some answers then I feel I have achieved something and hopefully they will tell two people who will tell two more.

 Thank you Sean, for sharing your story.

CELEBRATE

Thank you to all our volunteers without whom our work would not happen.

We thank out board - Diana Ayling, Gaynor Anderson, Heather Anderson, Monica Koia, and Brian Sheppard.

We thank those who help us on the website, and Facebook group, Gloria Rigg, Bernard Saunders, Mac Redmond and Janey Gregory, and Sean Woods.

We thank Bridie Murphy, for organising an excellent fundraising breakfast in Auckland 2018. The funds raised will support a number of significant projects for head and neckers.

We also thank Pamela Stephen for helping us with our accounts, and Nicky MacDonald for help with our new logo and website.

We are grateful to all the help professionals, and our head and neck community that support head and neckers in the regions and with local and online support groups.

 

Read more…

Weekly Wednesday

The lastest head and neck cancer news covers the era before immunotherapy, coping with grief and a new head and neck cancer drug that could make patients live longer. Enjoy!

Dr. Cohen on the Era Before Immunotherapy in Head and Neck Cancer

 

Ezra Cohen, MD, associate director, Moores Cancer Center at the University of California, San Diego, discusses the treatment era before immunotherapy in head and neck cancer.

Before PD-1/PD-L1 inhibitors came into the mix, there were very limited options in the treatment of patients with head and neck cancer. In the frontline setting, patients typically received the EXTREME regimen of 6 cycles of platinum, 5-fluorouracil, and cetuximab (Erbitux). This was an effective regimen compared with single-agent chemotherapy, with response rates in the low- to mid-30% range and median overall survival (OS) of about 10 months, Cohen says.

For patients who progressed on frontline therapy, they generally received single-agent chemotherapy or cetuximab. In this setting, the outlook decreased dramatically with median OS dropping to around 6 months and response rates falling to single digits. Notably, Cohen adds, this poor outlook did not come from lack of trying—researchers tested numerous targeted therapies and novel approaches but only saw negative trials until immunotherapy emerged.

COPING WITH GRIEF

Grief is a normal, natural response to the loss of a loved one to cancer. For many people, when someone they love is diagnosed with cancer they start the process of grieving early on. You might find yourself thinking about future events and how you will feel without your family member or friend with you.

Grief is not just sadness; you might also feel numb, angry, anxious, distressed, or lonely. You may also feel relief that you no longer have to be a caregiver or that your relative is no longer suffering. All these feelings are normal and you should not feel guilty about any of them.

Some people are able to talk about this together with the person who has cancer. Others are not. Be guided by what you feel you can cope with.

Coping with grief doesn’t mean getting over someone’s death or ‘moving on’. It means finding ways of living without them.

It usually helps to talk to someone – it could be a family member or friend. You might prefer to talk to a counsellor experienced in coping with grief or a bereavement support group.

There is no right or wrong way to grieve – everyone grieves in their own way. However, signs that you are not coping with grief can include:

  • feeling exhausted and overwhelmed all the time

  • feeling sad (or angry) all the time

  • gaining or losing a lot of weight

  • trouble sleeping

  • drinking a lot of alcohol or using drugs.

From Beyond Five https://www.beyondfive.org.au/Caregivers/Coping-with-grief

New head and neck cancer drug could help patients live longer

Pembrolizumab with platinum chemotherapy less ‘aggressive’ and extended survival rates

Prof Paul Workman
 Prof Paul Workman, chief executive of the Institute of Cancer Research in London, which carried out the study. Photograph: Keith Larby/Alamy

Immunotherapy could help patients with head and neck cancer live longer, new research suggests.

The drug pembrolizumab, used in combination with platinum chemotherapy, was found to extend survival among those whose disease had returned or spread, according to a study presented at the American Society of Clinical Oncology annual meeting in Chicago.

The treatment, which works by stimulating the immune system to recognise and fight cancer, was also effective on its own for some patients and produced fewer side effects than “aggressive” chemotherapy.

The findings of the study, carried out by the Institute of Cancer Research and Royal Marsden in London, suggest immunotherapy is a better first-line treatment for those with an advanced form of the disease, the researchers said.

Read more here...

Read more…

This week our news from around the world includes Sterling K. Brown interviewing cancer survivors, a reminder about HPV and an interview acknowledging the long-term and late effects of treatment. 

https://www.bms.com/about-us/our-company/survivorship-today.html

Researchers urge New Zealanders to get vaccine to lower throat cancer rates

Researchers are urging New Zealanders to get immunised against a virus known as human papillomavirus (HPV) in a bid to significantly reduce the country's alarming throat cancer rates.

They have found almost 90 per cent of throat cancer cases are now being attributed to HPV, which is most commonly picked up from oral sex. That's up from 62 per cent in the 1990s.

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12233941

Cancer Survivorship: Acknowledging the Long-Term and Late Effects of Treatment

Scientific advancements in the detection and treatment of cancer have improved survival rates. Even so, long term survivors of cancer face emotional, physical, and cognitive challenges in the aftermath of treatment. On this episode of Defining Moments, Dr. Laura Ellingson shares her personal story of cancer survivorship and how it informs her work with the American Cancer Society. Dr. Ellingson is the Patrick A. Donohoe Professor of Communication and Women’s and Gender Studies at Santa Clara University. She is the author of three award-winning books, and dozens of journal articles and book chapters.

You can listen to the podcast here.

You can read Dr. Ellingson’s recently published article on cancer survivorship in Health Communication.

Her latest book published by Routledge is available at a 20% discounted rate with the code IRK71.

Dr. Ellingson also journals about long term cancer survivorship on her blog Realistically Ever After.

Read more…

Kia ora tatou,

Network News

Head and Neck Cancer Community Concerns

In an Open Letter our Chair, Diana Ayling, addresses community concerns that have arisen over the last year. As the New Zealand health system faces significant pressures, it is important we as a community work collaboratively together, with one voice. Putting the past behind us is part of that process. Click here to read more....

Annual Members Survey Results

The Network carries out a Members Survey each year. We recently completed the Survey and I wanted to share the results with you.

We gathered some valuable data which helps us understand how we are tracking and how our people are feeling. We are pleased to see positive trends across all areas measured, which is heartening.

Some of you provided some comments. We hope we addressed these issues in our Annual Report. we strongly encourage everyone to read this document, and hope it answers any questions or concerns people might have. Click here to read the report. http://headandneck.org.nz/agm

We have appreciated your participation and willingness to provide feedback.  We had some great comments that will inform our work over the next year.

Our Net Promoter score was 0, (50/50 negative and postive) which means we need to do a lot more work to ensure members would recommend the Network to others. To see our results click here.

Members  Support

We have created a new category of member for the Network website - Friends of the Network. We know there are family, and friends of patients who want to support the Network, but do not feel they can as a "patient" classification. With the new category of member we hope you will feel you can share the community and website with others. When members sign up, they will choose their category and receive their own unique communications. 

If you want to update your profile, add a photo, or change your category you can do so by logging in to the website, and clicking the tab MYPAGE. 

Welcome to new members. Deb Seddon and Kevin Montague.

Website Support

We are working on rebranding the Network, and redeveloping the website. If you would like to make suggestions on the redevelopment you can do so here….

 

 

National Connections

Heather Anderson and Diana Ayling met with representatives of the Australian and New Zealand Head and Neck Cancer Society in Wellington. The meeting was productive and we have agreed to work on a number of projects together. 

In the photo from left to right, Ross Martin, Heather Anderson, Diana Ayling, Kevin McDonnell and Dr Swee Tan.

 

 

 

 

 

Patient Voice Aotearoa

Patient Voice Aotearoa (PVA) is a national collective of disease and illness advocacy organisations, as well as individuals throughout New Zealand. The primary function of PVA is to advocate for the rights of New Zealand patients. Already the response has been overwhelming and we are nearing 2000 members since we began establishing branches on Thursday afternoon this week.  There are some great ideas being floated between members, as well as some positive and constructive dialogue.  

Patient Voice Aotearoa will present a new round of petitions to Parliament in the near future. There are two drugs currently approved by MedSafe but not currently funded by Pharmac, which may be of benefit to people affected by head and neck cancer.

If you are interested in supporting this campaign, please contact us for more information. headandnecknetwork@gmail.com

Northland: https://www.facebook.com/groups/683895282050014/

Auckland: https://www.facebook.com/groups/438364430053731/

Waikato:  https://www.facebook.com/groups/435565943901449/

Bay of Plenty: https://www.facebook.com/groups/298886947658801/

East Coast: https://www.facebook.com/groups/299994910889938/

Taranaki: https://www.facebook.com/groups/627022347799464/

Hawke’s Bay: https://www.facebook.com/groups/609185609567883/

Palmerston North: https://www.facebook.com/groups/2336987913250472/

Wairarapa: https://www.facebook.com/groups/838784426505680/

Wellington: https://www.facebook.com/groups/363318734311738/

Tasman/Marlborough: https://www.facebook.com/groups/295952887949976/

West Coast: https://www.facebook.com/groups/918405465218335/

Canterbury: https://www.facebook.com/groups/318850652363899/

Otago: https://www.facebook.com/groups/617517028658349/

Southland:  https://www.facebook.com/groups/291732068437685/

 

Regional Connections

We are pleased to be working with the Auckland Health Foundation to refurbish the whanau room in Ward 74 of Auckland City Hospital. The hospital is a hub for patients from the greater Auckland and Northland area. We want carers, family/whanau and friends to feel comfortable while supporting those affected by head and neck cancer. If you can donate please do...make sure you follow the link to Ward 74. https://aucklandhealthfoundation.org.nz/get-involved/help-us-refurbish-ward-74s-whanau-room/?fbclid=IwAR1sgWzra9JH6zQMcEInktOecT8xp3K3Q2y7GN-RYtlcltlOnQbu746Wq44

 

 

 

Cancer Society - Wellington, Nelson, Wairarapa, Kāpiti, and Wellington

Many thanks to Margaret Alve, and her team for their hospitality on our recent visit to the Wellington base of the Cancer Society. There is a Head and Neck Support Group for folks in the area. They meet on the first Sunday of the month 2:30pm Ground Up Cafe, Pauahatanui. Contact Cheryl at pandcwotton@xtra.co.nz for more details. 

 

 

 

 

International Connections

The Latest Head and Neck Cancer News from Around the World 

Weekly Wednesday 22 May 2019

This week we have news from New Zealand research into head and neck cancer, a brave survivor speaks about the signs and symptoms of head and neck cancer, and we introduce you to a life saving technology - the Gamma Knife. Enjoy... 

World Head and Neck Cancer Day

For World Head and Neck Cancer Day 2019 we are joining with Australia’s Beyond Five to raise funds for the New zealand’s Head and Neck Cancer Support Network through Soup for the Soul. If you would like to host an event please register here and we will send you the support pack. https://forms.gle/TDNuYQkHwiJx84xL7

Online Support (Apps, websites, resources)

 

Canopy TV – an online news channel for the cancer community.

Canopy TV is a New Zealand based organisation that  aims to provide interesting and topical information to cancer patients and their families, increase people’s understanding of cancer and showcase interesting clinical developments in cancer treatment. https://www.canopycancercare.co.nz/canopytv

 

 

Save The Date!

10 June 2019 Auckland Support Group meeting. Domain Lodge, Grafton at 11am. Speaker Jacqui Allen - Voice and Swallowing expert.

Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm.

Thank You to our Corporate and Community Partners

International Groups

Online Support Community - Head and Neck Cancer Alliance

SPOHNC | Support For People with Oral, Head and Neck Cancer

HNC Support International: Head and Neck Cancer Support

Head and Neck Cancer | Cancer Support Community

Throat Cancer Support and Resources - Throat Cancer Foundation

Head and Neck Cancer Alliance Support Group & Community - Inspire

The Oral Cancer Support Forum

Head and Neck Cancer Survivors

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

Read more…

Response to Community Concerns

 

Kia ora tatou,

This is me, and my friend Hazel. In 2011 we were on the Derwent river, Hobart, Australia. We were on our way to see MONA, the Museum of Old and New Art. We had just presented our paper at the ASCILITE conference, Thinking, researching and living in virtual professional development community of practice.

We were thrilled that our paper was well received.  We were further delighted, when a respected Italian academic invited to write a book chapter in her upcoming book.  In 2013, our book chapter was published. From basic participation to transformation: Immersive virtual professional development Hazel, and the late Dr Edward Flagg, a co author, were wonderful colleagues, and true friends.

In 2014, I was diagnosed with cancer. Hazel and Ed provided loads of support and encouragement during that time. In 2017, Hazel was diagnosed with cancer. Roles were reversed. I provided her with support on her cancer journey.

Last year, Hazel was given the news that Western medicine could offer her no further treatment. In response, Hazel did what any good researcher would do. She got online. In her search for hope, she found a Swiss clinic offering treatments. Hazel flew to Switzerland, and took up the therapies offered. She had a wonderful time and returned to us glowing and full of energy.

The Swiss therapies could be described as both complimentary, and alternative. No one believed they offered cure. They could buy time.  For Hazel that is time to be with loved ones, in a place she loves, with the animals, and the things she loves. When Western medicine offered nothing, she found hope. To this day she defies the experts, and enjoys everything the day has to offer. I am in awe of her spirit and courage.

I share this personal story in response to a number of issues concerning the Head and Neck Cancer Support Network.  Recently, I received an email and I want to address each statement individually.

 

  1. “you lost it's beating heart when you disowned the value of the FB group”.  (Facebook Group -Head and Neck Cancer Support Aotearoa).

 

Since the inception of the Head and Neck Cancer Support Aotearoa closed Facebook group, I was, and remain fully supportive of the group. The group provides valuable emotional support to those affected by head and neck cancer. In July 2018 I was excluded from the Facebook group together with Head and Neck Cancer Support Network members, Heather Anderson and Sean Woods. From that point on, I cannot comment on the activities of the group. I wish them well in their work supporting people with head and neck cancer.

  1. “..you lost some of the keenest and most experienced HNC survivors when you aligned yourself with those who wanted alternative treatment.”

I fully support the members head and neck cancer community being free to discuss a range of treatments and therapies. That does not mean that I or the Network endorse them. Simply that as my friend Hazel did, people seek hope. If something different to Western medicine buys time, then that is an individual decision. I hope the head and neck cancer community has the wisdom and strength to support those who make those decisions.

I am hopeful that in an open and respectful forum, people affected by head and neck cancer can support each other to be informed and engaged in their treatment. This is living the values of the Head and Neck Cancer Support Network. To be, caring, respectful, engaged and informed.

I am including this explanation from the Mayo Clinic in regard to their online discussion forum - Connect..

  • Not every statement made by members on Connect (Discussion Forum) is accurate or evidence based. But by giving people space to express what they understand or perceive to be true, misunderstandings can be corrected.
  • In this open environment, members, mentors, moderators and — in some cases — providers have the opportunity to call out popular myths. And they can also point people toward reliable health information.
  • Rather than removing misguided information, this approach gives community members the chance to correct misconceptions and provide balanced, respectful debate. It can be a productive learning and bonding opportunity.

4) “...you have never acknowledged why the committee left or tried to make amends in an honest way.”

The Network board are respectful of the personal decisions of those committee members who resigned from the committee. I have stated over and over, the door is open to anyone who wishes to re-engage. We have made numerous suggestions for ways in which those involved in the Facebook group can collaborate constructively with the Network. All members are welcome at Network meetings.

5) “...you have alienated many in Auckland with your negative attitude to the DHBs.”

From May 2017, the Network was involved in the Review of the Head and Neck Service of the Northern Regional Alliance. This includes Northland, Auckland, Waitemata, and Counties Manukau District Health Boards.

The 2017 Head and Neck Cancer Service Review Final Report states, (p.6),

The review of current state service provision highlighted some key areas that need to be addressed:

  • Lack of consistency in service provision by the lead provider plus population growth and a desire to provide care close to home, has led to the uncoordinated development of HNC services in other DHBs, sometimes without ensuring a multidisciplinary approach or investing in the appropriate infrastructure for complex cases. It reflects a lack of leadership across the region and of an administrative structure that can be held accountable for service delivery ensuring that all patients have access to the same standard of care irrespective of where they live.
  • From a patient experience perspective, the aftercare is as important as the primary treatment in achieving a good outcome. From the extensive feedback from staff and patients it is apparent that there are significant gaps and shortcomings in the current service provision.

I am disappointed and saddened by the Head and Neck Service performance. People affected by head and neck cancer have high needs in terms of treatment, care, and support. Many of our community were negatively impacted by the shortcomings in the Service.

The Network worked hard to present the patient perspective in the Review process. I am a member of the Implementation Oversight Group. I am pleased to report a number of changes were made to the Service. There is a positive trend. More work and resource is needed. The Network will be supporting the continued efforts of the Service.

Moving Forward

I want to see a well performing head and neck cancer team, who own their team performance, monitor it regularly, and adjust their processes to address areas of concern. If this can be achieved, and I believe it can, this will be of real benefit to the head and neck community in the Auckland/Northland region.

This year the Network has two projects. One Voice, and Building our Community. We know that in the near future the head and neck community will face some significant issues. One of these issues is likely to be patients requesting access to unfunded life saving medicines.

To advocate for access and funding we will need to be connected, and united. This is our challenge as a community. It is important, and it takes courage. We can be bogged down in the past or we can face the future together with strength and determination. We invite you all to join us as we move forward. Everyone is welcome. Everyone is invited to make a contribution. Please contact us and let’s discuss what you can do to help. headandnecknetwork@gmail.com

Nga mihi,

Diana Ayling



Read more…

Weekly Wednesday 22 May 2019

This week we have news from New Zealand research into head and neck cancer, a brave survivor speaks about the signs and symptoms of head and neck cancer, and we introduce you to a life saving technology - the Gamma Knife. Enjoy... 

Medicine already in use may help cancer treatments

This story was originally published on Newsroom.co.nz and is republished with permission.

From the Bay of Islands to Brussels there's a call to take a fresh look at old drugs to see if they could treat cancer for a fraction of the cost of new medicines.

As New Zealand's baby boomers develop age-related cancer, research investment now could help reduce future cost and improve lives.

What if treatments for cancer have been under our noses for decades, cost a few cents and have already been extensively tested for safety?

Read more...

https://www.stuff.co.nz/national/health/112847817/medicine-already-in-use-may-help-cancer-treatments

A survivor speaks out about head and neck cancer

LITTLE ROCK, Ark. - (5/16/19) Karla Gray is speaking up, hoping that her experience will encourage everyone to know the signs of head and neck cancer.

"I had a lot of dryness in my mouth and unfortunately the right side of my tongue is numb" Karla says.

Karla also had trouble swallowing.

Doctors diagnosed her with head and neck cancer.

She says she had 33 radiation treatments and 6 chemotherapy treatments but it wasn't just one diagnosis.

Karla says she's had cancer 3 times in the head and neck area.

Now, she follows up with doctors every 3 to 6 months.

Gamma Knife Market to be at Forefront by 2020

 

According to a new market report published by Persistence Market Research “Global Market Study on Gamma Knife: Asia to Witness Highest Growth by 2020,” the global Gamma Knife market is valued at USD 526,733.2 thousand in 2014 and is expected to grow at a CAGR of 3.6% from 2014 to 2020 to reach an estimated value of USD 651,241.9 thousand in 2020.

Radiation therapy is a procedure entailing the precise delivery of high doses of radiation to tumors and other relevant anatomical targets. Gamma Knife radiosurgery is a major form of radiation therapy. It is mainly used to treat brain tumors, arteriovenous malformations, trigeminal neuralgia, acoustic neuroma, and pituitary tumors. Globally, the Gamma Knife market is witnessing significant growth due to increasing prevalence of cancer and obesity and growing aging population. In addition, rising number of initiatives undertaken by various government associations and the advanced features of Gamma Knife systems are also driving the growth of the market. However, stringent regulatory requirements and prolonged approval time for Gamma Knife systems and a high cost of implementation and shortage of skilled manpower inhibit the growth of the market. The global Gamma Knife market is anticipated to grow from an estimated USD 526,733.2 thousand in 2014 to USD 651,241.9 thousand by 2020 at a CAGR of 3.6% during the forecast period.

Read more…

Head and neck cancer news is very quiet this week. We bring you three stories to keep you thinking....

The 3 Essential Strategies To Come Back To Life After Cancer

The reality of life after cancer can be one of overwhelm and anger, of feeling lost and alone with no idea how to pick yourself back up and live the life you survived for.
 

Half Of Cancer Patients Struggle To Seek Help Because They Want To 'Stay Strong' For Family

Nearly half (47%) of people diagnosed with cancer said they found it hard to ask for help from friends, family and colleagues after they were diagnosed, according to research from Race for Life.

Four in 10 (43%) of those admitted they feared being pitied and by three in 10 (30%) name pressure to “stay strong” around family and friends as the reason they kept quiet. Read more...

Head and neck cancer: Could oral sex raise your risk?

New research has discovered that smoking and oral sex are tied to an increased risk of developing HPV-related oropharyngeal cancer, which is a form of head and neck cancer activated by exposure to the human papillomavirus. Read more....

Read more…

Kia ora tatou,

Network News

The Network has a new Board for the 2019/20 year. Diana Ayling (Chair), Heather Anderson (Secretary), and Board Members, Monica Koia, Brian Sheppard, and Gaynor Anderson. We elected to change the name of the “Committee” to “Board” and to allow online voting for any meeting of members. You can access the Minutes of the AGM here.

The Board is committed to two projects in the year ahead. We will be focusing on bringing the head and neck cancer community in New Zealand to have “One Voice” and to “Build our Community” by connecting people to the Network and with each other.

There are new developments with our website, the creation of a new form of Facebook group, and the continuing development of face to face support through support groups. We will keep you up to date through our Network News.

Members  Support

Last year 66 people joined the Head and Neck Cancer Support Network website. The Network community of 214 people all with shared interest in head and neck cancer. However, this is a small number of people affected by head and neck cancer in New Zealand, and we are striving to grow the community this year. Please encourage people you meet to sign up and join us. Family and friends are most welcome. 

Welcome to new members. Monica Ngaire Koia (Board Member)Adrianna PetermanPhilip HopeLana AndersonCarlos, and Jenn Lourie.

Website Support

Our website continues to serve people affected by head and neck cancer. The website had 34,000 hits in the last year. We are working to refresh the site, and to ensure it is usable and relevant. If you would like to make suggestions on the redevelopment you can do so here….

National Connections

 

The last week was very busy for many cancer organisations, as Patient Voice Aotearoa asked New Zealanders to sign petitions to Parliament asking for funding of life saving medicines. As an active member of Patient Voice Aotearoa we will continue to support this campaign.

http://headandneck.org.nz/news/right-to-live-join-hands-change-lives

http://headandneck.org.nz/news/access-to-life-saving-medicines-the-story-so-far

 

 

 

Regional Connections

We are pleased to be working with the Auckland Health Foundation to refurbish the whanau room in Ward 74 of Auckland City Hospital. The hospital is a hub for patients from the greater Auckland and Northland area. We want carers, family/whanau and friends to feel comfortable while supporting those affected by head and neck cancer. If you can donate please do...make sure you follow the link to Ward 74. https://aucklandhealthfoundation.org.nz/get-involved/help-us-refurbish-ward-74s-whanau-room/?fbclid=IwAR1sgWzra9JH6zQMcEInktOecT8xp3K3Q2y7GN-RYtlcltlOnQbu746Wq44


International Connections

For World Head and Neck Cancer Day 2019 we are joining with Australia’s Beyond Five to raise funds for the New zealand’s Head and Neck Cancer Support Network through Soup for the Soul. If you would like to host an event please register here and we will send you the support pack. https://forms.gle/TDNuYQkHwiJx84xL7

Online Support (Apps, websites, resources)

Live Better With 

A highly recommended set of resources

Live Better With Cancer makes everyday living a little bit better for the millions of people living with cancer all over the world.

Together with patients, their families, nurses, doctors and experts, they have handpicked 1000's products and written over 250 practical articles, guides and even a podcast to help ease symptoms and side effects, and improve the quality of day-to-day life.

They have built a thriving online community of over 70,000 people talking about cancer and supporting each other. Talking to and hearing from the community is helping build Live Better With into the most useful practical destination for people living with cancer - all of products and information are guided by community recommendations.

Uniquely, Live Better group all the products by how someone might be feeling (e.g., 'Feeling sick' or having 'Difficulty Sleeping'), so it’s very easy to discover all the relevant and helpful things that have worked for others with the same need as you.

https://cancer.livebetterwith.com/blogs/cancer/tagged/category_expert-guides

Save The Date!

10 June 2019 Auckland Support Group meeting. Domain Lodge, Grafton at 11am. Speaker Jacqui Allen - Voice and Swallowing expert.

Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm.

Thank You to our Corporate and Community Partners

International Groups

Online Support Community - Head and Neck Cancer Alliance

SPOHNC | Support For People with Oral, Head and Neck Cancer

HNC Support International: Head and Neck Cancer Support

Head and Neck Cancer | Cancer Support Community

Throat Cancer Support and Resources - Throat Cancer Foundation

Head and Neck Cancer Alliance Support Group & Community - Inspire

The Oral Cancer Support Forum

Head and Neck Cancer Survivors

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

Read more…

This week our Weekly Wednesday includes one man's struggles with the DHB system, new research indicates that HBO has limited benefits, researchers at MD Anderson Cancer Centre find some persistent aspects to HPV following treament and Lynn Aspey, explores "the new normal". Enjoy!

 

Reasons for a hospital pass

... to larger tertiary boards like Waikato or Auckland, and some covered by board ... Specialists employed or directly contracted by Taranaki DHB include ... "This is business as usual for Taranaki DHB…and most DHBs across New ...
 

Tackling side effects in head and neck cancer treatment – the end of the road for hyperbaric oxygen?

Some side effects appear years after cancer treatment. That's the case for one side effect of radiotherapy for head and neck cancer, called ...
 
Oral HPV DNA Persistence After Head and Neck Cancer Treatment Linked to Disease Progression
NEW YORK (GenomeWeb) – Persistent traces of human papilloma virus DNA after treatment for HPV-positive head and neck cancer is linked to an ...

 

Cancer Survivorship and the Mysterious 'New Normal'

Most people have heard the term "new normal" for individuals living, surviving and struggling with cancer. What actually does that mean? I can only 
Read more…
Friday was an easier start as we knew the format and layout ….. old hands we greeted each other like long lost family – we are united now. in this together …. Mostly health professionals but some big absences noted.
 
The first session was Rami Rahal from CPAC (Canadian Partnership Against Cancer, Canada). He spoke on improving outcomes through evidence-based policy and performance measurements. – OMG – fantastic work. He admits that currently we do better in involving our indigenous people which they do not. 
 
Dr John McMenamin (GP and Primary Care Adviser) followed with a talk on “Realising the potential in primary care.”
 
Dr Fatima Cardoso spoke to the Conference about the work that ESMO is doing and how it is useful for all cancers. It is currently use for advanced breast cancer.
 
Our first session after morning tea was an interesting talk on Palliative and Supportive Care. Dr Jonathan Adler from Capital and Coast DHB spoke. He explained how palliative plan should come in much earlier than it was doing. He understood that a talk of palliative care was really disturbing for patients. That Supportive Care model should be used more often. Generally, in New Zealand we do this well. It is especially difficult for people in the regions.
 
Dr Shaun Costello of Southern Cancer Network spoke on Radiation Oncology in NZ. He explained the variations in care. He indicated some of the ideas that will come about in the future.
 
Dr Chris Jackson of Cancer Society spoke on the changing face and changing pace of cancer care in the clinic.
 
Drs Jane O’Hallahan (National Screening Unit MoH)and Caroline Shaw (Public Health, University of Otago, Wellington) talked about Screening.
 
After lunch we had Rapid Fire Presentations from Dr Sandar Tin Tin (University of Auckland. His topic was Genotype testing and targeted therapy in lung cancer.
 
Dr Scott McFarlane (National Child Cancer Network & Starship Childrens Hospital). He spoke about shared care is fair care. He explained that our national model for child cancer services delivers equitable and high quality care. It is his belief that the model of hubs of excellence works and is proven.
 
Finally, Simon Pointer (Southern Cancer Network). He spoke about Faster cancer treatment . The pathway entry, ED presentations and routes to diagnosis.

Thank you Heather for such a great summary.

 
Read more…
Tena koutou.
 
Below are seven petitions that are being presented to Parliament next Tuesday (7 May) for 26 life extending or life improving drugs to be funded by PHARMAC, across six diseases (Lung Cancer, Breast Cancer, Ovarian Cancer, Chronic Lymphocytic Leukaemia, Multiple Myeloma and Pompe Disease).  Some of these drugs have been funded for many countries for many years.  Some of the petitions close within three days.  
 
Please take the time to sign each one (they only take twenty seconds each) and to pass the petitions on to your networks.  
 
Below the petitions is a notice regarding the presentation of the petitions under the banner of "Right to Live".  If you are in Wellington on Tuesday, please feel free to join us.
 
Thank you in advance
 
Malcolm Mulholland 
 
 
 
 
 
 
 
 
Read more…

This week our Network News covers a great new podcast from our friends in Australia, new developments in immunotherapy, Ellen Goodman gives you the maths on starting the conversation about End of Life Care, and finally some data on the rise of head and neck cancers. 

The Thing About Cancer

Listen to the welcome episode to find out what The Thing About Cancer podcast series is all about – and how it can help after a cancer diagnosis.

Get information and insights as host Julie McCrossin chats to experts and people affected by cancer.

Together we’ll explore topics ranging from coping with the emotional impact and making decisions about treatment, to managing side effects like nausea and fatigue and understanding how cancer might affect your sex life. We also talk about how to explain cancer to kids and how to support someone with cancer, as well as how all this can affect carers.

Produced by Cancer Council NSW, The Thing About Cancer is your companion through all things cancer.

Listen to the Welcome episode now, or find more episodes here.


Read more at https://www.cancercouncil.com.au/podcasts/welcome-episode/#8sJGAksxKb2KvL16.99

Novel combinations can capitalize on immunogenicity of head and neck cancer

NEW YORK — Nabil F. Saba, MD, FACP, professor of hematology/medical oncology and otolaryngology and director of the head and neck oncology program at Winship Cancer Institute at Emory University, spoke at HemOnc Today New York about combination approaches for head and neck squamous cell carcinoma in the immunotherapy era.

“Head and neck cancer ... is very immunogenic,” Saba told HemOnc Today. “The amount of infiltrative immune cells in head and neck tumors surpasses those of many other tumors, and ... data show reversal of immune suppression makes a big difference in the effectiveness of immunotherapy in this disease.”

Saba discussed the potential role of immunotherapy as part of combination therapy with radiation, chemotherapy or targeted agents.

https://www.healio.com/hematology-oncology/head-neck-cancer/news/online/%7B4b5b5c2e-1ff3-41a6-8e8c-459137732e56%7D/video-novel-combinations-can-capitalize-on-immunogenicity-of-head-and-neck-cancer

 

 

Start the Conversation About - End of Life Care

In a national survey conducted by The Conversation Project, we discovered some interesting facts that reinforce the importance of encouraging everyone, everywhere to have the conversation. https://theconversationproject.org/

 

Head and neck cancer on the rise

LANDSTUHL REGIONAL MEDICAL CENTER, Germany -- In honor of April's National Head and Neck Cancer Awareness Month, medical providers from the Ear, Nose and Throat Clinic, Oral Surgery Clinic and Speech-Language Pathology Department at Landstuhl Regional Medical Center held a head and neck cancer screening event at both the hospital and the Ramstein Exchange Apr. 17 where over 130 people from the community were evaluated. 

During the five minute screenings, patients were examined for signs and symptoms of head and neck cancers and were provided education on ways to detect and prevent them. https://www.army.mil/article/220702/head_and_neck_cancer_on_the_rise

For more information go to https://www.cdc.gov/cancer/headneck/

Read more…

This week our Network News is all about our Network. The AGM is to be held Monday 6 May at 6pm at Domain Lodge, Grafton, Auckland. Please check the details on our website. Patients, friends and family are most welcome to attend. It is an opportunity for members and prospective members to get together to discuss the performance of the Network over the year, and to plan for the year ahead. 

What is you cannot attend in person?

You can attend our meeting by accessing it through Zoom technology online. Zoom is very easy to use provided you have a computer with a camera and microphone. You will be prompted to give your permission for Zoom to use your camera and microphone, and you will have to agree for the software to work. All you need to do is click this link and follow the instructions.  https://zoom.us/j/413785284

You will need to register to attend the meeting. When you register we will send you a link to register as a member, and be entitled to vote at the meeting.  https://zoom.us/meeting/register/c51e02e387bb7d177c24e00bf0acd2b8

What happens at the AGM?

The Agenda includes two proposals for changes to the Network Constitution. The first proposal is to allow online voting at any meeting. The Committee think this is important to encourage participation in the Network. We want members to have their say on matters of importance. The second proposal is to change the word “Committee” to “Board”. The current Committee work as a Board representing the interests of members. We work on strategic matters and consider the word “Board” is more reflective of what we do.

The Minutes record the 2018 Annual General Meeting. If you attended last year’s AGM, please read and vote to approve as a true and correct record. 

What does the Network do?

The Annual Report summarised the outcomes of the Network over the last year. The Chair’s Report is below. To read the full report click the link.

Message from the Chair

Kia ora tatou,

The Head and Neck Cancer Support Network is now three years old. Since 2016, the Network connected 230 New Zealanders in the head and neck cancer (HNC) community. We have provided education and support for patients, family/whanau, friends and health professionals. As a Network we have advocated for better treatment, care and support for those affected by HNC.  Over the last year the Network partnered with a number of organisations to ensure the needs of head and neckers are known and understood.

This year was challenging for the Network. Disagreements at governance level over the direction of the Network let to a number of resignations. However, the Network has recovered well, is stable and progressing.

I wish to thank our Board for their work. The Board brings considerable knowledge and expertise to their roles. This year we have committed to two projects. “One Voice” and “Building our Community”. The aim of these projects is to build a strong Network of patients, friends, family and health professionals who can channel their voices through the Network.

This year we had a number of changes to the Board. We farewelled Maureen Jansen, Tammy von Keisenberg, Narelle Hoarton, Cosette Calder, Toni Davis, Olwen Williams, and Liz Gray. Heather Anderson (Timaru) and myself, welcomed new Board Members, Brian Sheppard (Wellington) and Gaynor Anderson (Currently Australia based). We thank our outgoing members for their contribution and support during our first two years.

Once again, it is a privilege and an honour to Chair the Network. I thank you for your extraordinary support this year. We have had our challenges and emerged stronger and more focused. I, and the Board will continue to work hard for New Zealanders affected by head and neck cancer.

Ngā mihi nui,

Diana Ayling

Chair

How can I get involved?

  • A link to a form to register your membership, and to vote on resolutions proposed for the AGM (online voting was approved at last year's AGM).

    It is important that you provided a residential address. This is a requirement of the Incorporated Societies Act 1908. 

How can I share my views?

  • A link to a Members Survey where you can give your feedback on the performance of the Network over the year. We are very keen to hear your thoughts on the Network performance over the last year. We are providing an opportunity for members to express their wishes for the year ahead. 

We encourage you and your family to register, to vote and give feedback as members of the Network. We look forward to you joining us and participating in the management of the Network. 

me te whakawhetai,

Diana Ayling

Chair

 

--

Read more…

This week we share with you some commonly head myths about Head and Neck Cancers, a touching story of a rugby player determined to make the best of his end of days, and we look at why there are so few women as surgeons. 

Commonly Held Myths of Head and Neck Cancers

There are many myths associated with head and neck cancer such as how environmental influences can affect our risk, or what role gender plays. Here, Dr Fauzia Riaz helps set the record straight to provide the real facts behind the myths. For the latest research on head and neck cancer at BMC, please read our ‘Oral, Head and Neck Cancer Awareness Month: Research Highlights’ blog. Then, when you're ready to test your knowledge, take our dedicated 2019 quiz on this topic. Read more…

 

 

'Too many people dying' - rugby player with terminal illness puts helping create national cancer plan on bucket list

A Southland man with terminal cancer has one large item left on his bucket list - to see a national cancer plan launched so the lives of others can be saved.

Blair Vining, a life member of the Midlands Rugby Club in Winton, created a bucket list almost immediately after he was diagnosed with terminal cancer in October, TVNZ1's Seven Sharp reports

The first item was a game of rugby with his mates which was held early this year, and drew a huge turnout of spectators. Read more…

 

 

 

Gender imbalance in surgery: we must focus on the future

Gender equality tackles the deeply held prejudice that men are somehow better or more apt than women to exercise certain faculties or fulfil certain roles. If crude testosterone was once an advantage to medieval or early battlefield surgeons, the advent of peace, prosperity, anaesthetics, haemostasis, visual enhancement, and micro-surgical techniques, among others, now allows a subtle approach to the most complicated anatomical situations. Surgery has changed and it continues to change; the genderless “it” of the robot placed between patient and operator will soon render gender-bias in surgery a laughable concept. Read more...

Read more…

From our representative Heather Anderson.

The Thursday afternoon sessions started with Prof David Currow (Cancer Institute NSW, Australia) talking about prioritisation experiences in cancer control in Australia – in particular hubs of excellence. See his presentation here.

Hon Steve Maharey, the new Chair of PHARMAC, talked on the processes of PHARMAC – my personal take was that he used his “newness” to avoid the hard questions.  There was an item of interest that he talked on which was a new drug would be requested and would be investigated and sometimes “parked” however it then meant that it stayed “on the list” so when anyone looked at “the list” there were all these drugs which in fact were clogging up the system.  

He talked about one of his first tasks was taking the “parked drugs” and putting them in a separate list so that it was clear what was being looked at currently, what had been investigated but was put to one side as it was not currently to be approved but may be needed in the future and those which were not going to be approved at all.  He also talked about “considering” the question of whether New Zealand using tests undertaken by others – in particular Australia, UK, or Canada.

Prof Ian Bissett (University of Auckland) talked of improving surgical quality in New Zealand – basically hubs of excellence with using technology for consultations to outlying areas.  You can see his presentation here...

Dr Richard Sullivan (NZ) (Oncologist Auckland DHB) – also known now as the Feathered Dr Richard Sullivan because of his flamboyant suit and to differentiate him for Prof Richard Sullivan of UK.  He spoke on Oncology service innovations and key challenges including bringing technology into treatment to allow patients to get best treatment while remaining closer to home. See Richard's presentation here.

This was followed by a “debate” “That precision medicine is the future of cancer care.” For – Dr Ben Lawrence (University of Auckland).  Against – Prof Richard Sullivan (Kings College London, UK). As to debate it was very much more humorous and very light hearted. At one point being a discussion on how good looking they were. See Richard's presenation here.

Read more…

Imaging Tool Helps Doctors Predict How Cancer Will Respond to Radiation

Clinicians who prescribe radiation to treat cancer face a fundamental difficulty in determining what dose to apply: They don’t know how individual tumors will respond to the therapy.

Now, a project by researchers at the University of Arkansas and Johns Hopkins University may promise a way to detect the difference between tumors in the lung and the head and neck that react positively to the therapy, by shrinking, and those that resist it. The researchers were able to detect resistant tumors in mice, though only clinical trials can confirm whether the same approach would work in people. Read more...

Chinese AI helps target head and neck tumors

GUANGZHOU, April 4 (Xinhua) -- Chinese researchers have developed an artificial intelligence (AI) medical tool that can help doctors target head and neck tumor cells faster and more accurately, according to an article published in the international journal Radiology.

Nasopharyngeal carcinoma is cancer that starts in the nasopharynx, which is the upper part of the throat behind the nose. Due to the organ structure and its location in the human body, surgery is always difficult, and radiation therapy is the most common form of treatment. Read more...

Rakuten's CEO Is Developing a Brilliant New Cancer Treatment: Light

 

 

Some types of innovation are fueled by curiosity. Others stem from the profit motive. (In many cases, it’s a bit of both). For Rakuten CEO Mickey Mikitani, the quest for groundbreaking science was born of heartbreak.

Mikitani’s father’s pancreatic cancer diagnosis (and eventual death) spurred the serial entrepreneur to form a biotechnology outfit centered on “photoimmunotherapy.” In simpler terms, Rakuten Aspyrian is attempting to treat cancer with literal light.

That journey began on the heels of the elder Mikitani’s diagnosis. “One of my friends called me, who was also a friend of my father’s… and said, by the way, my cousin is doing this new project, trying to cure cancer with light,” Mikitani explained during a one-on-one interview at the Fortune Brainstorm Health conference on Wednesday. “I was like, this must be a joke. But I was desperate.” Read more...

Poison drummer Rikki Rockett urging people to 'Open Up and Say Ahh!'

The Head and Neck Cancer Alliance (HNCA) is hosting its 21st annual Oral, Head and Neck Cancer Awareness Week (OHANCAW), April 7th-14th. Poison drummer Rikki Rockett joins HNCA as its official spokesperson, urging individuals, both nationally and internationally, to get a free screening during OHANCAW. Hundreds of sites throughout the United States and internationally will offer free oral, head and neck cancer screenings during OHANCAW. Rockett, founder and drummer of the rock band Poison, was diagnosed with HPV-attributed throat cancer in 2015 and is now in remission after undergoing radiation and immunotherapy. Read more...


[Read More at themusicuniverse.com/poison-drummer-rikki-rockett-urging-people-open-up-say-ahh/ © The Music Universe. All Rights Reserved.]

Read more…

Kia ora tatou,

Stand with our brothers and sisters affected by lung cancer. More New Zealand die of lung cancer than any other cancer. Sufferers are often stigmatised by smoking, when most have never smoked. The Lung Cancer Foundation are looking for support for their petition to have lung cancer declared a health priorty and to approve additional budget for Pharmac to fund lung cancer medications, including Keytruda, Alectinib, Osimertinib and Crizotinib, for all Kiwis with advanced lung cancer, irrespective of socio-economic status.

https://www.parliament.nz/en/pb/petitions/document/PET_86322/petition-of-philip-hope-for-lung-foundation-new-zealand?fbclid=IwAR0Er6gNod70xvpB1kq3bBVa0LExrfq8GSWo7Gv3KvV-Jr9vwb8mL-NsrDs

Notice of Annual General Meeting

Our AGM is to be held Monday 6 May at 6pm at Domain Lodge, Grafton, Auckland. Please check the details on our website.

You and your whanau are invited to attend.

If you wish to stand for the roles listed below, please send a letter of nomination to headandnecknetwork@gmail.com by 5pm 20 April, 2019. You will need to have a seconder for your nomination.

  • Chair
  • Secretary
  • Treasurer
  • Committee Member

Prior to the AGM (22 April) you will receive:

We encourage you and your family to register as members of the Network.

Auckland/Northland Review of Head and Neck Cancer Services

There are a number of projects underway to improve services for people affected by head and neck cancer.

  1. A new framework establishing levels of hospital preparedness for treating head and neck cancer is complete. Complex surgery should only take place in hospitals that have the facilities and the staffing to support patient safety and quality care.
  2. All public regional hospitals will be accredited to this framework. Not all hospitals will be able to do everything, and patients will need to travel to Auckland for certain treatments.

  3. The process for developing the integrated HNC Multidisciplinary Pathway in 3 distinct phases (GP referral to MDM, MDM to discharge and Discharge into survivorship) was outlined and supported.

  4. An updated Regional Recruitment Process was endorsed. Recruitment for all senior medical officer  positions working in the Regional HNC Service will need the approval of the Implementation Oversight Group.

  5. A new Advanced Allied Health Practitioner position description was approved.

  6. The Pathway Co-design Group is advancing work to improve the MDM experience for patients; the MDM booklet for patients is currently being refreshed. The group is looking to recruit more consumers (at least one of whom identifies as Maori), to change the name to the “Patient Co-Design Group” to become more encompassing and to meet quarterly in 2019.

  7. A report on indicative additional expenditure in the 2019/20 financial year requires more work. A subgroup has been established to review and prioritise expenditure items, noting that the report is indicative only i.e. a Business Case is required before there is any actual expenditure. It was agreed at the meeting that Oral Health is a priority and ADHB advised that a Project Manager to support the Oral Health work-stream is about to be appointed.

Auckland Support Group Meeting 2019

Our next meeting is held in the evening. We will meet at 6pm on 6 May 2019, at Domain Lodge. See the website for details. We are hoping to welcome many new attendees, those who work or have not attended a support group meeting before. Be rest assured the meeting with be low key with the emphasis on getting to know each other.

April Meeting

We had a small but vibrant turn out for our April meeting. Hannah Davies from the Auckland Health Foundation talked to us about the redecorating of the whanau room in ward 74. There were plenty of ideas, and experiences shared. Sarah Devine, of the Auckland DHB talked to us about patient feedback surveys. There are surveys for Inpatient Experiences (when you stay in hospital) and Outpatient (when you visit for a clinic appointment). We learnt that many patients report the same issues around adequate information and communication. Finally, we had Caryn Tasker and Tracey Hale from the Northern Regional Alliance speak to us about the changes to the Multi Disciplinary Meeting handbook. There was good discusion.

Thank you, to everyone who attended and we look forward to our next meeting 6 May 2019.

New Support Resources for You

We are aware of the great work of caregivers in supporting people affected by head and neck cancer. This week we have a resource for caregivers of newly diagnosed patients. Advice for Caregivers (Early days)

Useful Patient Technologies

We bring you new development in technologies which support treatment, care and support. This week...

At our Auckland Support Group meeting patients were keen to receive a survivorship plan after treatment. There is an excellent resource here https://oncolife.oncolink.org/ Click the icon

You will receive a plan that includes:

  • Coordinating Your Care
  • Follow Up Care For Head & Neck Cancers: Tongue, Lip, Oropharynx, Nasopharynx
  • Surgery Side Effects
  • Risks Related to Medications
  • Radiotherapy Side Effects
  • Healthy Living After Cancer
  • Life after Cancer

It is well worth the time and effort to do this.

Head and Neck Cancer National News

Immuno-oncology treatment
KEYTRUDA is an immuno-oncology treatment for advanced and re-ocurring head and neck cancer. It may be used when platinum and cetuximab-based* therapies do not work, or are no longer working. You can find our more here.

New Zealand Health and Disability Review

We are intending to make a submission on the current state of the New Zealand health and disability system. We will collate all your responses and present them to the Review. Submissions from organisations are powerful. We intend to advocate for the best treatment, care and support for people affected by head and neck cancer. If you wish to share your thoughts you can do so by accessing our survey here. https://www.surveymonkey.com/r/GZZY9F8

World Head and Neck Cancer Day 2019

If you are interested in holding and event or helping out with an event be sure to let us know. Email: headandnecknetwork@gmail.com

If you are interested in making and selling ribbons on the day. Let us know. We have ribbon, pins, and thread. You can make them while watching Netflix!  If you can sell them for $1 each, that money will go towards supporting patients through the Network.

Save The Date!


Looking for answers or support?

The Cancer Society knows that going through cancer is tough and can raise many questions. They want you to know that they are here for you. From help with getting to your medical appointments or understanding your treatment options, to offering practical support, they can help.

The Cancer Society can help you find answers to questions about your treatment and its effects. There are pages of cancer information online and in booklets, and they are always available for emotional support when things get tough.

For answers, support or just a chat, call us free on 0800 CANCER (226 237) Monday to Friday, 8.30am–5pm.

Thank You to our Corporate and Community Partners

International Groups

Online Support Community - Head and Neck Cancer Alliance

SPOHNC | Support For People with Oral, Head and Neck Cancer

HNC Support International: Head and Neck Cancer Support

Head and Neck Cancer | Cancer Support Community

Throat Cancer Support and Resources - Throat Cancer Foundation

Head and Neck Cancer Alliance Support Group & Community - Inspire

The Oral Cancer Support Forum

Head and Neck Cancer Survivors

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

Read more…

Health and Disability Survey

We are intending to make a submission on the current state of the New Zealand health and disability system. We will collate all your responses and present them to the Review. Submissions from organisations are powerful. We intend to advocate for the best treatment, care and support for people affected by head and neck cancer. If you wish to share your thoughts you can do so by accessing our survey here. https://www.surveymonkey.com/r/GZZY9F8

The Government is currently asking for feedback on the New Zealand health and disability system. The deadline to submit feedback is 31 May 2019.

This first round of consultation is seeking feedback on how the health and disability system is working currently and to identify critical issues to improve the effectiveness and equity of the system.

You can give feedback by completing an online survey in English, Te Reo Māori or Plain English.

Background about the review In May 2018, Health Minister Dr David Clark announced the review of the New Zealand health and disability sector. He said the review would "... look at the way we structure, resource and deliver health services – not just for the next few years but for decades to come."

The Terms of Reference for the review state that the purpose of the review is to "... identify opportunities to improve the performance, structure, and sustainability of the system with a goal of achieving equity of outcomes, and contributing to wellness for all, particularly Māori and Pacific peoples."

The review has a broad focus on achieving "wellness, access, equity, and sustainability" in the health and disability system. The review will consider a number of points, including: "Contribution of and the interaction between health and other social sector agencies in supporting health and wellness."

David Clark said the Terms of Reference for the review are "deliberately wide" and "allow for a more thorough assessment of the disability sector."

The Review will be chaired by Heather Simpson. The other review panel members are Shelly Campbell, Professor Peter Crampton, Dr Lloyd McCann, Dr Margaret Southwick, Dr Winfield Bennett and Sir Brian Roche. The panel is expected to release an interim report in August 2019, following the consultation. A second round of consultation will be invited on the interim report. A final report is expected to be provided to the Government in March 2020. For questions email systemreview@moh.govt.nz.

Thank you to those who have shared their thoughts on improving care for people affected by cancer. If you have not yet had your say you can do so here. https://www.surveymonkey.com/r/GZZY9F8

Read more…

Weekly Wednesday 27 March 2019

How to Cope With Post-Cancer Fear


Credit: Photo compliments of Robert Brown Robert Brown, a retired attorney, leans on a sign post at Chamonix-Mont-Blanc, a resort area in the Alps near the junction of France, Switzerland and Italy. Brown has survived throat and bladder cancer and continues to live an active life that includes golf, backpacking and yoga.

You get cancer. You get it fixed. After treatment ends, you get something new: a black cloud that can follow you around for decades. Is this normal?

“There is no ‘normal’ end date for fears after a brush with cancer,” says Dr. Lidia Schapira, medical director of the Cancer Survivorship program at the Stanford Comprehensive Cancer Institute in Stanford, Calif.

“Data from the National Cancer Institute show that up to twenty five percent of cancer survivors experience some symptoms of depression and forty five percent experience anxiety,” Schapira says. “To put that in perspective, about twenty percent of veterans that served in Iraq or Afghanistan suffer from post-traumatic stress disorder.” Read more….


Immunotherapy likely to become standard for recurrent/metastatic head and neck cancers

 

The standard treatment for patients with recurrent or metastatic head and neck cancers is expected to change from chemotherapy to immunotherapy based on results of several randomized, phase 3 studies, according to a presenter at HemOnc Today New York.

It is still unknown whether a regimen of immunotherapy and chemotherapy could become the standard of care.

“The treatment of recurrent disease in head and neck cancers is very challenging and has remained challenging even though we have made significant progress over the last few years with checkpoint inhibitors,” Robert I. Haddad, MD, chief of the division of head and neck oncology at Dana-Farber Cancer Institute, said during his presentation. “These patients have significant quality-of-life issues. They usually have a lot of pain, they can’t work, and many of them don’t socialize... so there’s a lot of reasons to look at this patient population and improve outcomes.” Read more here....

Head and Neck Cancer Survivors Share Tried-and-True Tips for Oral Care After Treatment

Treatments for head and neck cancer, especially chemotherapy and radiation, can trigger changes in your mouth that will require extra care.

We went straight to those who know best — head and neck cancer survivors — to find out what works and what doesn’t.

Keep reading to get tips from Head and Neck Cancer Alliance (HNCA) ambassadors.

Read more...

Read more…