Head and Neck Network's Posts (314)


Improved cancer care for Kiwis


This week they have released their updated New Zealand Cancer Action Plan, David saying it better reflects the voices of people whose lives are ...

Surveillance of ctDNA in HPV-Positive Head and Neck Cancers May Predict Recurrence

Targeted Oncology

The detection of circulating tumor DNA (ctDNA) in human papillomavirus (HPV) with an experimental blood test has been associated with high positive ...

Newly established Cancer Control Agency recognises World Cancer Day

"The updated New Zealand Cancer Action Plan 2019-2029, which was published yesterday, clearly outlines what we need to do for the future, ...

Blood Test Accurately Identifies HPV-related Head and Neck Cancer Recurrence; Prospective ...

Business Wire (press release)

WALTHAM, Mass.--(BUSINESS WIRE)--A novel blood test can detect recurrent Human Papilloma Virus (HPV)-related head and neck (oropharyngeal) ...

Botanical drug is shown to help patients with head and neck cancers

EurekAlert (press release)

People with advanced head and neck cancers have a low survival rate and current treatment options such as surgery, radiation and chemotherapy ...
Read more…

The petition was launched in the later part of 2019 by Diana Ayling. The petition acheived over 640 signatures, and was presented to David Seymore, Member of Parliament for Epsom in November 2019. The petition was tabled in Parliament on the same day. The petition was referred to the Health Select Committee. The Committee are seeking a written submission before speaking with Diana Ayling at Parliament.

The Committee is meeting 12 February 2020 and will review the Network's written submission. They will decide whether there is value in speaking with our representatives. 

More news to come....

A Rare Disorder Medicine is Funded by Pharmac

After years of campaigning by Kiwi families affected by cystic fibrosis, Pharmac has finally announced plans to fund "breakthrough" drug Kalydeco. It is the first medication that fixes the underlying cystic fibrosis defect, essentially turning off cystic fibrosis for patients with the G551D mutation. Until now, New Zealand has been the only OECD country to not fund Kalydeco, with many patients considering a shift to Australia to gain access to it. Here's our full story from last night's newscast.


Anders Jansson-Bush's Story

An Auckland cancer sufferer, who gifted sunflowers from his front lawn to try raise $100,000 in donations to fund the anti-cancer drug Keytruda, has died.

Steve Wilson's Story

A Thames man is sharing his experience with cancer drug Keytruda in the hope it will help his children and other New Zealand families.

Sixty-three-year-old Steve Wilson says his life was saved after he paid $100,000 out of his own pocket to receive Keytruda treatment.

Now he wants it made accessible through funding from Pharmac for a number of other cancers including the one he had.


Pharmac Funded Breast Cancer Drug Ibrance


US doctor saves life of Kiwi woman with cancer after her call for help on Facebook

An Auckland woman has revealed that the advice she was given from a US doctor in a Facebook group saved her life — after being told she only had months to live.

In 2018, Diana Craig was diagnosed with oropharyngeal (throat) cancer that spread to the lymph nodes in her neck.

After the 52-year-old underwent two radical surgeries, one that was life-changing that left her swallowing and eating compromised, and radiation, doctors told her the cancer had gone.


Miracle drug' Keytruda approved for use earlier in melanoma treatment


Read more…

Potential for new political party as lobby group pushes to increase Pharmac funding



Patient Voice Aotearoa chairman Malcolm Mulholland said the concept of new political entity campaigning for better drug buying policies is gathering support.

Mr Mulholland, whose wife Wiki has terminal cancer, is calling for the doubling of funding to Pharmac.

He said patients with a raft of health issues, ranging from cancer to mental health, are being forced to "beg for their lives" when it comes to accessing the latest and most suitable drugs.

At a packed meeting attended by patients and more than 30 advocacy organisations, Patient Voice Aotearoa launched a new campaign called All I Want For Christmas Is To Live.

Read more here and ....



Read more…

Five Steps to a New Normal: Life After Cancer

This article was written by Jenny Leyh, a mother, freelance writer, cancer survivor and integrative health advocate living in Haddon Heights, New Jersey.

Hearing the words “you have cancer” was devastating. It was a life-altering diagnosis that caused time to stand still. But once a plan was established and the treatment began, the fear and unknowns morphed into empowerment. My medical team kept a close eye over everything I did and it was comforting to know that I wasn’t facing this alone.


But once active treatment ended and my calendar went from being filled with appointments to a light schedule of check-ins, the anxiety and fear once again emerged. “You’re cancer-free,” said my doctor, and life was supposed to move on. While everyone around me was celebrating, I once again felt alone and afraid of this new unknown.

Read more....

Read more…


EU approval for Keytruda in head and neck cancer

The European Commission has approved MSD’s Keytruda (pembrolizumab) as monotherapy or as part of a combination, for the first-line treatment of patients with metastatic or unresectable recurrent head and neck squamous cell carcinoma (HNSCC).

The regulatory body says that the approval was based on data from the Phase III KEYNOTE-048 trial, in which the drug, compared with standard treatment (cetuximab with carboplatin or cisplatin plus 5-FU), demonstrated a significant improvement in overall survival (OS) as monotherapy and in combination with platinum and 5-fluorouracil (5-FU) chemotherapy. Read more...

Tipifarnib Yields 100% Disease Control in HRAS-Mutant Head and Neck Squamous Cell Carcinoma

The signal transduction inhibitor (STI) tipifarnib induced disease control in all patients with HRAS-mutant head and neck squamous cell carcinoma (HNSCC) and a high variant allele frequency (VAF), according to preliminary results of a phase II trial presented at the 2019 American Association for Cancer Research–National Cancer Institute–European Organization for Research and Treatment of Cancer International Conference on Molecular Targets and Cancer Therapeutics.1

“We have compelling antitumor activity in the heavily pretreated cohort of patients with recurrent metastatic head and neck cancer with HRAS mutations,” Alan L. Ho, MD, PhD, Geoffrey Beene Junior Faculty Chair at Memorial Sloan Kettering Cancer Center in New York, New York, said during a presentation of the data. “This occurred regardless of previous progression on chemotherapy, immunotherapy, and cetuximab.”  Read more...

UAB launching Sullivan Survivor Program for head and neck cancer in 2020


Read more here...


Read more…


The Patient Voice Aotearoa chairperson says better medication funding is desperately needed

Eight petitions with 48 thousand signatures were presented to parliament - pleading for money for drugs and devices.

Malcolm Mulholland says the organisation has now decided to lodge their own petition.

He says they are calling on the Government to immediately double the PHARMAC budget with plans to triple it in the future, as well as reform the agency. Read more....


Petitions Presented: A United Stand for Medicines

Today at Parliament at 12.30 pm, eight petitions are being presented for medicines to be funded for a number of diseases to Members of Parliament from ACT, National, Labour and NZ First. Representatives of the political parties will speak, as well as the petitioners.  Read more...

Cancer warning: Radiation from CT scans linked to increased risk of thyroid cancer


CANCER currently has no cure, but research is looking into what can increase the risk of it developing and how to prevent it. A new study has found exposure to radiation from CT scans is associated with higher risks of developing thyroid cancer and leukaemia. Read more...


Read more…

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....

Read more…

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 


Read more…

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 


Read more…

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 


Read more…

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.

Read more here....



Read more…

Seniors Need Vaccinations Too


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


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’.


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


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....


Read more…


Wake-up call for cancer agency boss Diana Sarfati


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


(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.

Read more here....



Read more…

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


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.

Read more....

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.

Read more....

Read more…