Head and Neck Network's Posts (302)

Deputy Prime Minister Admits Pharmac Needs More Money

Patient Voice Aotearoa welcomes the comments made by the Deputy Prime Minister Winston Peters on ‘The Project’ on Friday last week. Peters stated “Right now…we know we are not spending nearly enough on pharmaceuticals and first world drugs…the reality is that Pharmac’s budget is not big enough and we have to face that as a country and make some accommodations to give people the treatment and first world drugs that they deserve. We have a $7.5 billion surplus, so let’s take a look at Pharmac’s funding to ensure that people like that get the treatment they need, at the time that they need it.” Read more....

 
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A Human Right To Life

3715202910?profile=RESIZE_710xThe Universal Declaration of Human Rights is a cornerstone of the modern world. The Declaration gives everyone the right to life, freedom, and safety from harm. In New Zealand we value and respect the Declaration. We promote human rights internationally. So, why are we denying New Zealand citizens right to live through life saving medicines? Head and neck cancer patients facing a life threatening illness should have access to Keytruda a potential life saver. We want to see every person every time having access to the same standard of care. 

We believe all citizens of New zealand have the right to life saving medicines. 

We believe Keytruda should be a fully funded treatment option for any New Zealander that needs it. 

Please sign Diana Ayling’s Petition to fund Keytruda. https://www.parliament.nz/en/pb/petitions/document/PET_89949/petition-of-diana-ayling-for-head-and-neck-cancer-support 

 

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Fair Treatment for all

3715190423?profile=RESIZE_710xUnder Right 4 of the New Zealand Patient Code of Rights, you have the right to receive good care and support that meets your needs. That means that all options for treatment should be available to you. This is even more important if you have a life threatening illness. If you have metestatic head and neck cancer and Keytruda is a treatment option it should be provided to you. If not, why not? 

We believe all citizens of New zealand have the right to life saving medicines. 

We believe Keytruda should be a fully funded treatment option for any New Zealander that needs it. 

Please sign Diana Ayling’s Petition to fund Keytruda. https://www.parliament.nz/en/pb/petitions/document/PET_89949/petition-of-diana-ayling-for-head-and-neck-cancer-support 

 

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Keytruda versus Cancer

Keytruda is an immunotherapy medicine for the treatment of cancer. For those head and neck cancer patients who have mestatic squamous cell cancer, this is a new treatment option. Previously patients were treated with platinum therapies - chemo therapy. However, now we are meeting people who have been diagnosed with a terminal illness, completely cancer free following treatment with Keytruda.

In New Zealand Keytruda is not publicly funded. So those who can afford to pay for the expensive treatment can access it. Those who cannot afford it are prepared for end of life.

We believe Keytruda should be a fully funded treatment option for any New Zealander that needs it. 

Please sign Diana Ayling’s Petition to fund Keytruda. https://www.parliament.nz/en/pb/petitions/document/PET_89949/petition-of-diana-ayling-for-head-and-neck-cancer-support 

 

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New developments in the treating of head and neck cancer, and diagnosing thyroid cancer. 

 

Emerging thyroid cancer test may prevent unnecessary surgeries

Thyroid cancer is among the most curable types of cancer, with relative survival rates close to 100% for localized and regional tumors. Incidence of the malignancy has increased rapidly, with about 52,000 new cases diagnosed each year in the United States, according to American Cancer Society data.

Fine-needle aspiration, which is the current standard in thyroid cancer diagnostics, yields inconclusive results in about one of every five cases. In these cases, patients often undergo a follow-up genetic test, which is prone to false-positive results. This may prompt surgical intervention, which can lead to lifetime hormone replacement therapy and other repercussions and ultimately may prove unnecessary.

Zhang, graduate student Rachel DeHoog and colleagues at The University of Texas at Austin and Baylor College of Medicine, have developed a preoperative thyroid cancer test that is not only faster, but approximately two-thirds more accurate than the current diagnostic tests. Zhang and DeHoog spoke with HemOnc Today about the potential for their test to prevent excessive false-positive results and surgeries. Read more....

Study: Checkpoint inhibitor prolongs survival in patients with head and neck cancers

The checkpoint inhibitor pembrolizumab (Keytruda) offers patients with advanced head and neck cancers longer survival time, according to a new global study led by Yale Cancer Center (YCC). The data was published today in the journal The Lancet.

The findings show overall survival was significantly improved through a phase 3 study for participants with previously untreated recurrent or metastatic head and neck cancers, compared to the standard therapy.

This research demonstrates that use of this checkpoint inhibitor, with or without chemotherapy, should be the first drug used for these types of cancers. This is a very positive advance in treatment for our patients."

Barbara Burtness, M.D.

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Seniors Need Vaccinations Too

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Adults should be vaccinated against cancer-causing human papillomavirus (HPV) to save ‘thousands’ more lives, said a UK expert.

According to a dailymail.com article on September 28, 2019, cancer scientists say ‘evidence is now emerging that giving the jab to those who already harbor HPV could protect them as well,’ per Margaret Stanley of Cambridge University, president of the International Papilloma Virus Society. Read more here....

Cancer medicines need to be part of the plan

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Breast Cancer Aotearoa Coalition is extremely disappointed to read that access to cancer medicines does not appear to be a priority for New Zealand’s new cancer control agency according to its national director, Diana Sarfati, in a recent interview.

‘The new cancer agency represents a great opportunity to improve cancer care and outcomes, and it should have people at its heart’, says BCAC Chair Libby Burgess. ‘We are hoping that it will be an inclusive organisation that values the wisdom and contributions of New Zealanders with lived experience of cancer’.

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Deborah Schobel: Are there silver linings to long term cancer survivorship?

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Deborah writes.... My personal favorite side effect of living longer as a “cancer survivor” is that you live longer than you would have if cancer had ended your life. Simply put: you end up having to deal with a lot of things that you would not have had to deal with if you were no longer here. This has both challenges (stormy weather clouds) and benefits (silver cloud linings). The longer anyone is alive, the more life they experience. Aging does have benefits (being present to experience positive times and opportunities) but it also brings some unwanted life experiences, and having survived cancer does not grant anyone immunity from them. Sometimes it helps to remember that in this case, the challenges of an aging body are a benefit of long term survivorship! Perspective is the key. One definite silver lining of survivorship is that cancer survivors usually develop a new appreciation for health and often seek ways to improve their own. Read more here....

 

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Wake-up call for cancer agency boss Diana Sarfati

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OPINION: Statements about priorities for the new cancer agency made by agency head Professor Diana Sarfati  are cause for serious concern. 

Last Saturday's profile of Sarfati, in which she was asked to name her three priorities, said: "One thing not on that priority wish list is more money for the stream of high-cost, life-prolonging drugs for terminal cancer, which prompt patient petitions and marches to Parliament."  

So it seems prolonging life is not a goal of this agency. And yet there are many New Zealanders with incurable cancer who are alive and leading productive, quality lives, thanks to modern medicines.  Read more here...

 

Radiation for head and neck cancer may cause problems years later

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(HealthDay)—Ten years after radiation treatment for head and neck cancer, some patients may develop problems speaking and swallowing, a new study finds.

Read more here...

New treatment extends life of advanced melanoma patients

Half of people diagnosed with advanced melanoma, which once had dismal survival rates, are now living for five years or more when they receive a combination immunotherapy treatment, a study has shown.

A decade ago, only one in 20 patients were still alive after five years. Most died within six to nine months. Researchers from the Institute of Cancer Research and the Royal Marsden hospital in London, who have pioneered the work, said the five-year survival rate for just over half of their patients was a landmark.

While they could not talk of a cure, they said they hoped some people would go on to have a normal life expectancy.

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Our weekly round up of Head and Neck cancer news from New Zealand and around the world. This week an apology to a head and necker who suffered brain damage, the future of robotic surgery, and we can learn from breast cancer about the value of survivorship plans and nurse navigators. 

DHB 'looking to make changes' after man left brain damaged, patient's wife told

3635268822?profile=RESIZE_710xAuckland Hospital staff have apologised to a Dargaville builder left with brain damage after he was given an overdose of morphine.

Members of the hospital's review team, which included head oncologist Dr Richard Sullivan, met Trevor Flood and his wife Kylie last month to discuss the events leading up to the incident and how the couple had coped since. Read more here...

 

Robotic surgery operating a world away could aid regional patients, but costs still too high

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Surgeons in regional areas say robots capable of performing intricate medical procedures could bridge vast distances and benefit regional patients, but the cost of the equipment is too high.

Key points:

  • Robotic surgery was first used in Australia in 2003 for prostate surgery
  • There are about 62 robotic surgery units in Australia, most are in the private sector and in cities
  • A monopoly on the machines is about to end, with more equipment ready to be approved for use

 

Robots have the potential to reduce waiting lists and increase the number and types of procedures carried out in rural areas.

But a general surgeon in Port Lincoln, South Australia, doubted that robotic surgery would be economical viable in small regional areas.

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Patient-Specific Survivorship Programs Improve Quality of Life for Patients With Recurrent Breast Cancer

Patients with recurrent breast cancer are faced with a unique set of challenges that often go unaddressed by health care providers. A study presented at the ESMO Congress 2019 in Barcelona, Spain, found that implementing a patient-specific survivorship program significantly improved quality of life for this patient population.

Patients with recurrent breast cancer may experience fluctuations in functional status, changes in relationships, difficulty in communicating with loved ones, and existential concerns. The researchers reasoned that, “Oncology nurse navigators have a unique relationship with their patients and implementing [patient-specific survivorship programs] provides an opportunity to address these important and clinically relevant unmet needs.”

In the study, researchers identified the individual needs of survivors by evaluating their responses to the Functional Assessment of Cancer Therapy–Breast (FACT-B) survey. Each patient then received an individualized hour-long coaching intervention. Immediately after and 2 weeks post the intervention patients experienced statistically significant improvements in each subscale of the FACT-B survey, indicating an overall improvement in their quality of life.

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Each week we share Head and Neck Cancer News from around the world....

Machine learning improves the diagnosis of patients with head and neck cancers

3611206494?profile=RESIZE_710xResearchers have successfully solved a longstanding problem in the diagnosis of head and neck cancers. The researchers used artificial intelligence to develop a new classification method which identifies the primary origins of cancerous tissue based on chemical DNA changes. The potential for introduction into routine medical practice is currently being tested. Read more here...

 

HPV vaccinations seem to be creating herd immunity for US men

Oral HPV infection rates are now 37 per cent lower among unvaccinated US men, suggesting the widespread rollout of the HPV vaccine has led to herd immunity.

In the US, vaccinations to protect against the most common types of HPV were first officially recommended for girls in 2006 and for boys in 2011. In addition to causing most cervical cancer, HPV is also linked to some types of mouth and throat cancers.

Despite this, little research has been done on the effects of the vaccine on oral cancers, so Anil Chaturvedi at the National Cancer Institute in the US and his colleagues looked at a nationwide survey on HPV infections in the years following the vaccines’ introduction.


Almost 14,000 adults took part in the survey, conducted from between 2009 and 2016. Over those years, HPV vaccination rates increased from zero to 5.8 per cent in men and from 7.3 per cent to 15.1 per cent in women.

The power of mini organs: Vivian Li at New Scientist Live

During this period, the prevalence of the types of HPV included in the vaccines dropped from 2.7 per cent to 1.6 per cent in men who had not been vaccinated. This represented a 37 per cent drop among the unvaccinated adult men.

This suggested herd immunity was protecting these men, the team wrote. “Herd protection likely arises from increased levels of female HPV vaccination in the US population.”

Read more: https://www.newscientist.com/article/2215760-hpv-vaccinations-seem-to-be-creating-herd-immunity-for-us-men/#ixzz60PubGQeM

You have survived cancer: What comes next?

3611184893?profile=RESIZE_710xAs more patients are successfully treated for cancer, a daunting new challenge awaits: navigating the physical and emotional challenges of being a survivor.

When the treatment ends, the patients’ next journey is just beginning. They are left with new health issues often caused by the treatment itself, such as damage to the heart and other organs, or worsening high blood pressure and diabetes. Studies show many struggle with depression, fatigue and nagging fear that the cancer will return. Sexual function and personal relationships may suffer.

Compounding it all, survivors often feel alone and adrift as they face those challenges. According to a new survey of cancer survivors by the nonprofit National Coalition for Cancer Survivorship, few feel very prepared for the transition to posttreatment, nor informed about how to manage their health going forward.

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Cancer action 10-year plan should only be a 'start'

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Paul Ryder considers himself lucky to be alive.

The 68-year-old Timaru man was diagnosed with cancer in his vocal cords in 2017, but with treatment the disease went into remission and finally subsided.

He says the New Zealand Cancer Action Plan 2019–2029, announced by the Government on Sunday, should only be a start in the fight against the disease as much more than the allotted extra $60 million was needed to find a cure, and more radiation treatment centres would prevent stress due to travelling long distances.

https://www.stuff.co.nz/timaru-herald/news/115474256/cancer-action-10year-plan-should-only-be-a-start

 

Member Malcolm Mulhollance Launches a Petition to Review Pharmac.

Malcolm is a member of the Head and Neck Cancer community. He is leading Patient Voice Aotearoa to fund more medicines for those of us who are affected by cancer, and other diseases. He has launched a petition to review Pharmac and significantly increase funding for medicines. You can read his reasons for the petition below together with a link to sign. If you are interested in following the progress of Patient Voice Aotearoa as it represents New Zealanders health vote by joining the Facebook group. https://www.facebook.com/groups/2336987913250472/

Petition reason

We think there are issues involving Pharmac and how they fund medicines - Pharmac does not adopt international guidelines; it does not set a timeframe by which it will be decided if a medicine is efficacious and another timeframe when it will endeavour to fund a medicine if it is deemed to be efficacious; it needs to establish a rapid access scheme; and the budget needs to be increased as its budget is just over 5% of the Vote Health budget in comparison with the OECD average of 16%.

We think there are issues involving Pharmac and how they fund medicines - Pharmac does not adopt international guidelines; it does not set a timeframe by which it will be decided if a medicine is efficacious and another timeframe when it will endeavour to fund a medicine if it is deemed to be efficacious; it needs to establish a rapid access scheme; and the budget needs to be increased as its budget is just over 5% of the Vote Health budget in comparison with the OECD average of 16%.

https://www.parliament.nz/en/pb/petitions/document/PET_91080/petition-of-malcolm-mulholland-for-patient-voice-aotearoa

What are the early signs of oral cancer?

Symptoms of oral cancer include difficulty chewing, lumps and sores, and white or red patches in the mouth. Early detection and treatment of oral cancer can help prevent the cancer from developing further or spreading to other areas.

Oral cancer is caused by the uncontrolled growth and reproduction of cells in some regions of the mouth. It can occur inside the cheeks, under the middle and front of the tongue, or on the tissue lining of the mouth or gum.

There are about 49,700 new cases of oral cancer each year in the United States, which accounts for around 3 percent of all cancer diagnoses. More men than women receive a diagnosis of oral cancer.

https://www.medicalnewstoday.com/articles/322575.php

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Head and Neck Cancer Network Launches Petition

3433802167?profile=RESIZE_710xThe Head and Neck Cancer Network have added their voice to the other cancer organisation calling for Pharmac to fund cancer drug Keytruda. MedSafe approved the drug for use in head and neck cancer after chemotherapy. However, Network Chair Diana Ayling says, Keytruda needs to be available as an option with surgery, radiotherapy and chemotherapy”.

At present HNC patient, Diana Craig is funding her own treatment with donations from a Give a Little Page. She hopes to raise $75,000 for her treatment. Diana says, “A biopsy has shown that the tumours are likely to respond positively to a recognised head and neck cancer treatment, perfect for my type of cancer, immunotherapy called Keytruda. Unfortunately, Keytruda is not funded through the public health system. I have been given the prognosis of months to perhaps possibly a few years to live depending on the success of treatment.” 

Diana Ayling, says head and neck cancers are often misdiagnosed by primary health providers. Once diagnosed patients find treatments of surgery, radiotherapy and chemotherapy extremely difficult. Some patients are changed forever, unable to speak, swallow, or taste. Head and neck cancers may be disfiguring, and lives are changed. 

One of the biggest issues facing head and neck cancer patients is postcode care. DHB’s offer different levels of support for patients. Some patients are provided with free items to manage their care and live their lives, others have to pay or enter into co-pay arrangements. Diana Ayling says, “Ideally, every head and neck cancer patient has access to the same level of care, provided with the devices they need, and have access to rehabilitation, and reconstruction services”.Read more here....

http://www.scoop.co.nz/stories/PO1908/S00209/nine-new-parliamentary-petitions-launched-for-vital-medicine.htm

Drummin Out Cancer

 

3433792446?profile=RESIZE_710xWhat Rikki Rockett, founder and drummer of the rock band Poison, thought was a passing illness turned out to be the start of a harrowing ordeal with throat cancer.

Head and neck cancer accounts for about 4% of all cancers in the United States, according to the American Society of Clinical Oncology. Rockett learned of his type, HPV-attributed throat cancer, in 2015.

In an interview with Heal®, he shared how his disease was found and describes his experience with immunotherapy — the treatment he credits for helping him achieve remission.

Read more here....

Survival and Chemotherapy Rates for Various Cancers

Although head and neck cancers are not included in this article, it is a very interesting exploration of chemotherapy to treat cancer. 

Chemotherapy is a powerful treatment that involves taking medications to damage cancerous cells. The goal is to prevent these cells from dividing and multiplying.

This article outlines the use of chemotherapy drugs in the treatment of different cancers. We describe how many people with different types of cancer undergo chemotherapy as part of their treatment.

We also give information about survival rates for people with these types of cancer, according to the stage of cancer when a person received the diagnosis.Read more here...

 

 

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Kerslake's message to Jacinda Ardern: 'We're falling behind' 

This article is part of a Because It Matters Newshub series.

Described as New Zealand's "most prolific cancer survivor", Phil Kerslake says he's worried the country's falling behind in terms of cancer care, and is urging the Prime Minister and the Health Minister to pick up the pace.

Kerslake, who's survived eight new diagnoses or recurrences of cancer since 1974, says while he thinks New Zealand's "come a long way", the Government is acting too slow on new cancer treatments.

The 60-year-old UK-born author - diagnosed with incurable lymphoma - said Prime Minister Jacinda Ardern and Health Minister David Clark have been "very, very slow and considered" in their approach to cancer care for Kiwis. 

Read more here....

Bitter, salty, sour, sweet

For chef Scott Adair, the diagnosis was a worst-case scenario. In 2014, he kept feeling short of breath when playing paintball with his son. “I thought I had inflamed lymph nodes or something,” he remembers. Instead, doctors gave the 49-year-old dad the news that there was a major mass in the back of his throat. A surgeon near Adair’s home in Asheville, North Carolina, told the chef that the only answer was surgery to remove his jawbone and almost half his tongue. The news put Adair into a state of shock. “My greatest tool is my tongue,” Adair says. “I make a living using my taste buds.” Would he really have to lose his tongue to save his life? Read more about this amazing story and the treatment... here..

 UK cancer patient receives new jaw thanks to 3D printing

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3D printing techniques are being adopted with increasing regularity in surgery of all kinds, and more and more patients are seeing a hugely improved quality of life thanks to the unique benefits of the technology. The most recent success story took place in the UK, where a patient’s jawbone was entirely reconstructed using bone from his leg. The pioneering surgical procedure made use of 3D printing at various different stages. Read more here...

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This week we share the news of 12 new cancer-fighting radiation machines, more funding for immunotherapy research, interesting news about the HPV vaccine, and finally, Judy Kirchmeirer tells her story of 10 years of cancer. 

Government's cancer response: PM Jacinda Ardern unveils 12 new cancer-fighting radiation machines

3409552019?profile=RESIZE_710xThe Government has unveiled the first tranche of its cancer plan, announcing a $25 million spend on 12 new radiation machines nationwide.

But the plan, announced by Prime Minister Jacinda Ardern and Health Minister David Clark at Wellington Hospital today, stops short of a commitment to setting up a National Cancer Agency.

Ardern said the Government would be unveiling a further "major announcement" when it releases its Interim Cancer Action Plan later this month.

The new linear accelerator machines will replace older ones in places such as Hawke's Bay, Taranaki and Northland. Read more here...

 

 

 

Government to fund $4.9m over five years for cancer immunotherapy research

Cancer immunotherapy research funding from the Government means new hope for cancer patients. 

Estimates say the therapy could save 2812 New Zealand lives in 20 years, and cancer survivor David Downs says the funding will change lives for those short on time.  

"People who are otherwise in a hopeless scenario are going to have another chance at life."  Read more here...

One dose of HPV vaccine may be enough, Australian research finds

One dose of human papillomavirus (HPV) vaccine has comparable effectiveness to two or three doses for preventing cervical pre-cancer, according to a new study.

 

In a large national data linkage study published in Papillomavirus Research, researchers compared cervical screening outcomes for a quarter of a million Australian women who were eligible for vaccination under the national program.

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A Decade of Cancer Survivorship: What Helped Me Through It

 Judy Kirchmeier writes of her 10 year cancer story.

I remember seeing copies of CURE in my oncologist’s reception area; I took the Winter 2019 copy to read about cancer. At home, I decided to fill out CURE’s subscription card and just got the spring issue in the mail – I couldn’t put it down!

I’m going into 10 years of survival from highly aggressive triple-negative breast cancer; now it’s my turn to write about my experiences based on the stories in this issue. My younger sister-in-law and I were diagnosed with breast cancer a few months apart, but for some reason, family members wanted to keep it secret from both of us. Neither one of us started treatment when first was diagnosed as we were waiting for different things to fall in place. NOTHING was the same after we were diagnosed. She had double mastectomy and I had two surgeries at once: lumpectomy with sentinel lymph node biopsy.

Read more here...

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Network News 5 August 2019

Kia ora tatou,

Network News

World Head and Neck Cancer Day 2019

We had good media coverage for the day. I would like to thank the Australia New Zealand Head and Neck Cancer Society, the New Zealand Dental Association, the Gillies MacIndoe Research Institute, the Sexually Transmitted Diseases Education Foundation, the Cancer Society, www.hpv.org.nz and the wonderful team at Wellington Zoo. A great effort. You can read all the information shared here. http://headandneck.org.nz/news/weekly-wednesday-31-july-2019-whncd-roundup

Annual Fundraising

Thank you to all those who raised funds by holding Soup for the Soul events. We have had some great fun sharing a simple bowl of soup with friends and colleagues. You are welcome to hold and event or make a donation to through our Give a Little page or directly to our Kiwibank account. Some of you have chosen to make a donation instead of holding an event. Thank you. All donations are gratefully received. 

https://givealittle.co.nz/donate/cause/share-some-soup-for-the-soul

Kiwibank 

38-9017-0819902-00 HEAD AND NECK CANCER SUPP…

 

Annual Members Survey 

3179346521?profile=RESIZE_710xIt's your very last chance to take our survey and share your thoughts on your situation a experiences to date. We have had 8 people share their experiences. We would like a better representation of our 200+ Network members. Remember the information you supply is anonymous. We take care of the data, and release it only as appropriate. Please take our Annual Survey. https://www.surveymonkey.com/r/hncnz2019

Membership News

We welcome new members Ieti TiatiaLeonie BradshawDesmond BerghanSaul MeredithNgaakete Andrews, and Trish.

We are really pleased to have you on board. Be sure to get involved with our Facebook group or discussion forum. More details below.

 

Please update your Network Profile

We are asking you to revise your profile on our Network. We will be emailing you to do this. We are seeking indications as to whether you wish to register as a member of the Head and Neck Cancer Support Network. If so, we need your address and phone number to include you in the register. 

As a member we give you:

The opportunity to have your voice heard at a national and local level in decision making related to head and neck cancer treatment, care and support.  Representation with the Auckland District Health Board, and the Northern Regional Alliance on the Northern Cancer Network Head and Neck Cancer Service Review Implementation Oversight Group, the Australia and New Zealand Head and Neck Cancer Society, the Gillies MacIndoe Research Institute, the New Zealand Cancer Society, Volunteering New Zealand, the Ministry of Health, Patient Voice Aotearoa, The New Zealand Dental Association, the Sexually Transmitted Diseases Education Foundation, www.hpv.org.nz,and a variety of international organisations.  Support through our website, and resources. Social connection through a closed Facebook group, and our Network Discussion Forum.  Support groups, events and activities throughout New Zealand. 


National News

You may be aware of the recent dicussion and debate around a dedicated Cancer Agency. The idea is that such an agency would be fairer for people affected by cancer, and less vulnerable to political change. We are keen to hear your views. To start off the discussion I am linking you to the thoughts of one our our member Chris Flaherty. Chris writes a blog about his treatment pathway. In this post he talks about the value of the central cancer agency. https://chrisflaherty03.blogspot.com/2019/06/ If you would like to share your thoughts with Network members you can do so here. http://headandneck.org.nz/welcome-forum/a-central-cancer-agency-yes-or-no

You can follow this story in the media, as it relates to the Blair Vining Petion. https://www.parliament.nz/en/pb/petitions/document/PET_87829/petition-of-blair-vining-better-cancer-care-for-all-new

 

Regional Connections

The Auckland/Northland Regional Service 

3179320365?profile=RESIZE_710xThe Auckland regional HNC service is continuing great work in improving their performance to meet the needs of patients. There are four positive outcomes this month:

An accreditation process is approved and will be implemented. This accreditation process requires each hospital in the region to assess its readiness to offer HNC services. There is a range of classifications with only the highest level facility able to offer complex HNC surgery and treatment. The funding for consumables -that's all the things patients need - has been approved and will ensure that everyone in the region has the same access to equipment they need for living well. The new treatment room at Auckland City Hospital is up and running. Early feedback suggests patients find value in this new privacy. If you have any views on this feel free to login and share them in our forum. http://headandneck.org.nz/welcome-forum
The Ministry of Health is working with the Auckland regional service to develop quality performance indicators (QPIs) and Patient Reported Outcome Measures (Proms). This work will commence next month and run for three months. 

 

 

2479985177?profile=RESIZE_710xPatient Voice Aotearoa is continuing to work hard for better access to medicines, a central cancer agency, and better outcomes for people affected by cancer. You can get involved by joining Facebook groups in your region and by becoming part of the Nationwide Network. https://www.facebook.com/groups/438364430053731

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/

 International Connections

If you want to find out all that happened around the world on World Head and Neck Cancer Day then turn to Twitter. Use the hashtag #whncd2019 for all the tweets. And look who has the final tweet. 3399922526?profile=RESIZE_710x
 

Online Support (Apps, websites, resources)

Live Better With

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Live Better With Cancer is here to make everyday living a little bit better for the millions of people living with cancer all over the world. You will find a treasure trove of resources and support. Highly recommended. https://cancer.livebetterwith.com

 



Looking for answers or support?

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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.

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HPV infection on Head and Neck Cancer Awareness Day

From Radio New Zealand...."World Head and Neck Cancer Day is tomorrow and this year there's a push to highlight the correlation between these cancers and the HPV virus. 

These cancers are increasing at a faster rate than other cancers, so what is the connection and is it preventable? 

Jesse Mulligan was joined by Professor Swee Tan, an expert in the field, to tell us more." Click here to listen.

Canterbury DHB supporting World Head and Neck Cancer Day

Christchurch Hospital Cancer specialists, together with the Cancer Society Canterbury-West Coast Division, are raising awareness about early signs of head and neck cancers ahead of this year's World Head and Neck Cancer Day (tomorrow, 27 July).

The goal of World Head and Neck Cancer Day is to highlight head and neck cancers to the general public and support health professionals to increase their knowledge of early diagnosis and the treatment available.

Dr Robert Allison, Head and Neck Surgeon in Christchurch and past President of the New Zealand Society of Otolaryngology Head and Neck Surgery, says head and neck cancers often go undetected because many people don't recognise the early warning signs and symptoms.

“We're supporting World Head and Neck Cancer Day in the hope it helps raise awareness of the disease and the signs to look out for because treatment is more likely to be successful and less invasive if symptoms are recognised at an early stage,” Dr Allison says. Read more here...

Plea for greater awareness of head and neck cancers

THE New Zealand Dental Association (NZDA) called for greater awareness of head and neck cancers on World Head and Neck Cancer Day on Saturday, July 27.

Head and neck cancers are the fifth most common types of cancer worldwide, with more than one million new cases detected annually.

New Zealand has the world’s fourth highest incidence of oral cavity cancer, with about 500 new cases each year.

“Dentists have the training and the proximity to help in the detection of some head and neck cancers, particularly oral cancers, which is yet another benefit of regular dental and oral examinations,” said NZDA spokesperson Dr Ajith Polonowita, an oral medicine and oral pathology specialist. Read more here...

The vaccine that can prevent cancer

As well as including skin cancers, cancers of the nasal passages, salivary glands and other areas, the "head and neck" group also includes oropharyngeal cancers – those that affect the middle part of the throat.

Oropharyngeal cancers definitely aren't well known, but numbers of people affected by them are growing at an alarming rate – and the consequences of these cancers can be devastating. Read more...

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This week it was hard to find any head and neck cancer news at all! Maybe everyone is enjoying the break. We did find some interesting research into why not many Kiwis participate in clinical trials, a really interesting range of services at the Mayo Clinic, and a new head and neck cancer vaccine goes to trials.
Enjoy!

Why are so few Kiwi cancer patients in clinical trials?

Most Kiwi cancer patients are keen to take part in clinical trials, a survey shows, despite a tiny proportion actually being involved in them.

Cancer now affects one in two Kiwis - either directly, or through a friend or family member being diagnosed - and survival rates for some forms of what is New Zealand's biggest-killing disease have risen sharply over recent decades, as a result of new therapies and patients joining trials.

Despite that, participation rates in New Zealand have been traditionally low - the number in enrolled in trials was estimated to be only between 1 and 2 per cent, far below international targets.

Previous studies have put that down to a mix of factors like the personal cost involved, age, confidence in the study and a lack of trials on offer. Read more...

Head and Neck Cancer - Mayo Clinic

 

 

Transgene begins trials of head and neck cancer vaccine

Virus-based immunotherapy biotech Transgene is to begin clinical trials of its head and neck cancer drug candidate TG4050 after gaining regulatory clearance from the UK regulator.

Transgene focuses on developing virus-based immunotherapies for solid tumours and has received approval from the UK’s Medicines and Healthcare Products Regulatory Agency (MHRA) to begin a phase 1 trial of TG4050.

TG4050 is being developed as a potential treatment for patients with newly diagnosed, locoregionally advanced, HPV negative, squamous cell carcinoma of the head and neck (SCCHN).

Derived from the French biotech’s myvac platform, TG4050 has been designed to stimulate and educate the patient’s immune system to recognise and destroy tumour cells. Read more...

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This week we share with you a few tips to keep your Chin Up, a story on the prescribing of OxyContin, and some tips on how to communicate with your healthcare team. Enjoy!

 

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Pharmac has spent tens of millions on OxyContin, blamed for America's opioid crisis

Pharmac has spent tens of millions of dollars funding a painkiller at the centre of the American opioid crisis. Experts say it has created a whole new population of drug users. National Correspondent Tony Wall investigates.

3251658965?profile=RESIZE_710xOxycodone, known by its brand name OxyContin or more colloquially as 'Hillbilly Heroin', was meant to be an alternative for people who didn't tolerate morphine.

Instead, statistics uncovered by Stuff reveal morphine use edged upwards while prescribing of oxycodone took off.

Between 2005, when Pharmac began funding oxycodone, to the 2011-2012 financial year, the number of times the drug was prescribed climbed from 9607 to 185,884 - a jump of more than 1800 per cent.

Read more....

Communicating With Your Health Care Team

Do you understand the information you're getting from your health care team? Do you know what questions to ask? You need good communication to get the best care from your health care team members.

Your health care team is made up of professionals such as doctors, nurses, social workers, psychologists, pharmacists and others who care for your physical and mental health. Each member of your team is specially trained to help you cope with certain aspects of your life during and after cancer treatment.

Members of your health care team may seem very busy. However, it’s important that you have time together to discuss questions and concerns. When you schedule your appointment, you may need to ask for extra time to have these conversations.

Read more....

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Kia ora tatou,

Network News

3268268799?profile=RESIZE_180x180This month we launch our fundraising campaign for the year. Although we run a lean and mean operation, we need your donations to ensure we can continue our work of connecting, supporting and advocating for people affected by head and neck cancer. 

This year we are joining with Beyond Five in Australia to raise funds through Soup for the Soul. Simply, you make up a soothing, comforting bowl of soup, share it with your friends, family and colleagues. Ask your diners to make a donation to Head and Neck Cancer Support Network. You can forward the funds through Give a Little or alternatively direct to our bank account. 

https://givealittle.co.nz/donate/cause/share-some-soup-for-the-soul

Kiwibank 


It's a friendly, and restoring way to share with the others the support and kindness of the head and neck cancer community. You can see our progress on our website. We have a lovely new widget reading $0 funds as I write. We need approx $3,000 a year to run our Network, so your help is greatly appreciated. 

You can find our Soup for the Soul Brochure here. SoupfortheSoul2019.pdf

World Head and Neck Cancer Day 2019

The day is held on 27 July each year. There are a number of events taking place around the world. If you are involved in an event, and would like to share please let us know. We are happy to publicise your event. If you want to follow the day on Twitter the hashtag is #WHNCD2019 or you can join the Facebook Group https://www.facebook.com/WHNCDAY2019/

Annual Members Survey Results

3179346521?profile=RESIZE_710xEvery year at this time, we take the temperature of the head and neck cancer community to find out the needs of patients and their families/whanau. This year's survey is open for the month of July. There are less questions that last year, so it's even easier to participate. If you have any specific issues you wish to raise, we have an open ended question for you. https://www.surveymonkey.com/r/hncnz2019

Membership News

We welcome new members Liza Gyde and Lynette Cornes.   

 

 

Website Support

3179285497?profile=RESIZE_710xWe have redeveloped our website. We hope you like to new logos and new look. This is a new beginning for the Network. We will be further developing our website to provide support for members before, during and after treatment. More to come in this space. 

National News

2479985177?profile=RESIZE_710xPatient Voice Aotearoa is continuing to work hard for better access to medicines, a central cancer agency, and better outcomes for people affected by cancer. You can get involved by joining Facebook groups in your region and by becoming part of the Nationwide Network. https://www.facebook.com/groups/438364430053731

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

The Auckland/Northland Regional Service 

3179320365?profile=RESIZE_710xThe service is introducing private scoping of patients at the Multi Disciplinary Clinic held each Friday. Patients will be examined in a private room, adjacent to the Multi Disciplinary Meeting. The patient examination will be available to the clinicians in the meeting through a video link. This will ensure the dignity, privacy and respect for the patient, their family/whanau and carers. This development has been a year in the making. We are very proud to have supported this improvement for patients. We hope to see it replicated in other treatment centres. 

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

 Beyond Five are the Australian charity with the specific aim of supporting people with head and neck cancer. See here for the latest newsletter. As usual it is packed with valuable information. B5_Supporter_Newsletter_Issue_7_July_2019.pdf
 

Online Support (Apps, websites, resources)

Live Better With

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Live Better With Cancer is here to make everyday living a little bit better for the millions of people living with cancer all over the world. You will find a treasure trove of resources and support. Highly recommended. https://cancer.livebetterwith.com

 



Looking for answers or support?

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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 we share with you the progress of Blair Vining's petition for the establishment of a national cancer agency with oversight for care throughout the country. There is a new single shot that could help with complex head and neck cancer, and will less side effects. And finally, there are problems in delays at Counties Manukau District Health Board. If you are affected please contact the Network or the author of the article.

 

Cancer care reform: Terminally ill father's petition crashes after immense support

 

3175160213?profile=RESIZE_710xA Southland father's petition calling for cancer care reform has been extended after the number of people attempting to sign it online caused Parliament's website to crash. 

Blair Vining, a 38-year-old father of two, was diagnosed with terminal bowel cancer late last year and had to seek life-lengthening treatment through the private sector.

His petition calls for the establishment of a national cancer agency with oversight for care throughout the country.

Mr Vining accepted any reform would come too late for him, but he hoped to save other lives.

The petition was due to close at 5pm today, but has been extended until 7 July.

"The website crashed so we had to extend it," he said. Read more here...

 

 

 

Shot could remove side effects from late-stage head and neck cancer therapy

58e378ef3aa34.jpg?profile=RESIZE_710xFor advanced stages of head and neck cancer, one of the best treatments is so aggressive that it could bring tooth decay, speech loss, constant nausea or all of the above.That's because the treatment combines two therapies—chemotherapy and radiation—which means double the cancer-killing power, but also double the side effects. A large proportion of the 63,000 Americans diagnosed with head and neck cancer each year are ineligible for this treatment because they are too old or too sick, but most don't know they have the cancer until after the age of 50.Read more...

 

 

 

South Auckland cancer patients facing 'significantly' long waits for urgent treatment 

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Counties Manukau DHB, which operates Middlemore Hospital and the Manukau Superclinic, has not met the Ministry of Health's faster cancer treatment target since last year.

Cancer patients are being forced to wait for treatment "much longer than they should be", according to a report.

The Ministry of Health's faster cancer treatment (FCT) guidelines state 90 per cent of patients referred urgently with a high suspicion of cancer should receive their first treatment within 62 days. 

Counties Manukau DHB – which covers south and part of east Auckland – has been "significantly" under target since June 2018, only hitting 76 per cent this quarter, the agenda for Wednesday's board meeting showed. 

Between October and March, only 140 of the 185 eligible patients received their first cancer treatment within 62 days, meaning there were "symptomatic cancer patients waiting much longer than they should be," the report stated. 

Counties Manukau DHB provides health services for more than half a million Aucklanders.

There had been an "enormous" increase in the number of people seeking cancer treatment, it said.

Patients choosing to reschedule or delay appointments, capacity issues, including theatre capacity, and system issues such as administrative errors, were all "challenges" in meeting the target, a DHB spokeswoman said.

Capacity constraints were "by far" the largest cause of breach.

 Gynaecology, lower gastrointestinal, lung, and head and neck cancers were contributing to more than 50 per cent of the total 62-day patient volume and 80 per cent of the capacity breaches. 

The number of patients entering the 62-day pathway for gynaecology and head and neck tumour streams has more than doubled compared to same date range in the previous year, the report said.

The DHB spokeswoman said while it was "concerning to see the target not being met" it was committed to "continuously" reviewing its processes to make improvements. 

That included monitoring and oversight of all cancer streams and recruiting to fill any vacancies that provide cancer services. 

Cancer Society medical director and oncologist Dr Chris Jackson said the DHB's figures "should raise alarm bells". 

Nationally, DHBs were "pretty poor" when it came to reporting FCT targets, he said. 

Read more ....

Have you been waiting a long time for treatment? Email hannah.martin@stuff.co.nz

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Northland man left with brain damage after suspected morphine overdose in Auckland hospital

A Northland man has been left with brain damage due to a suspected morphine overdose he received in hospital. 

Trevor Flood, 56, has been left confused and cannot remember how to use a TV remote, his wife Kylie Flood told Radio NZ's Morning Report

The Kaipara builder had gone into Auckland City Hospital on February 12 dehydrated and in severe pain after a course of radiation therapy for throat cancer.  Read more...

Researchers identify traits linked to better outcomes in HPV-linked head and neck cancer

3076929744?profile=RESIZE_710xUsing a new blood test that's in development, University of North Carolina Lineberger Comprehensive Cancer Center researchers identified characteristics that could be used to personalize treatment for patients with a type of head and neck cancer linked to HPV infection. Read more...

Personalized medicine: Testing therapies on mini-tumors of head and neck cancer

Head and neck cancer is an aggressive type of cancer that often recurs, despite patients undergoing harsh treatments. Researchers have succeeded in growing mini-tumors (or organoids) of head and neck cancers, that can be kept alive in the petri-dish for a long time. These mini-tumor were shown to predict patient response to therapy. Thus, this technique holds promise to identify the right therapy for the right patient. Read more...https://www.sciencedaily.com/releases/2019/06/190617100936.htm

Cancer Survivorship and The Art of Letting Go

I have a daily calendar on my desk with very wise sayings. One that really stood out was by J.C.Watts. “It doesn’t take a lot of strength to hang on. It takes a lot of strength to let go.”
    
I had to think about this for a minute. We have all seen cartoons and pictures on Facebook and in newspapers of an animal – usually a cat – “hanging on” a ledge – sometimes just waiting until Friday! This looks hard when you are barely able to use your fingernails and digging in. So what does this have to do with being a cancer survivor?Read more here...
    

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