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Head and Neck Network's Posts (144)

After the worrying news that the `wonder drug’ Keytruda may not be living up to its reputation  it’s always good to remember there are many new attack fronts opening up and new treatments being trialled in the cancer war.  A couple of those new and promising developments are detailed below.


Scientists find new method to target hard-to-treat head and neck cancers

(U.K.) Researchers at The Institute of Cancer Research, London, and The Royal Marsden NHS Foundation Trust used MRI scans to detect the size and distribution of areas varying in oxygen content, called cycling hypoxia, within head and neck tumours.

They suggest that the amount of variability may be linked to survival and these areas could be targeted by new personalised cancer treatments, such as image-guided radiotherapy where doses can be focused on small areas.

Professor Martin Leach, one of the lead researchers, based at the Cancer Research UK Cancer Imaging Centre at the ICR said: “The unique environment within a tumour is far more complex and changeable than we thought only a few years ago.”

“This is the first time anyone has clinically examined the effectiveness of dynamic Intrinsic Susceptibility (IS) MRI to monitor cyclical changes in tumour oxygenation. The technique has enabled us to learn more about how levels of oxygen vary in tumour cells over time and how this might impact patient outcome.

“If our findings are confirmed in larger studies, then this scan could one day be available at all hospitals with an MRI scanner.”

Anna Perman, Cancer Research UK’s senior science information manager, said: “Patients with head and neck cancers are more likely to have their disease return, because cells with low amounts of oxygen are harder to reach with conventional treatments including radiotherapy and chemotherapy.”

“Being able to image oxygen levels in this level of detail could help develop targeted treatments and improve the chances for patients of surviving their disease.”

Full story:

New cancer drug reduces tumor size by 'up to 50 percent'

(U.K.) New research from the University of Southampton in the United Kingdom investigates the way in which cancer takes over certain cell types and uses them as a life support. Finding a way to target these turncoat cells could help to reduce a tumor's success.

One of the many reasons that cancer is so difficult to treat is its ability to hijack normal cellular components and switch them from useful to deadly. Cancer can therefore turn vital, natural cell types against the body.

As Dr. Aine McCarthy, Cancer Research UK's senior science information officer, says, "Some cancers are incredibly difficult to treat and can use the body's own cells to help them grow, evade treatment, and spread around the body. Researchers have been trying to unlock the secrets behind this for many years."

The findings of the most recent study in this field, carried out by researchers at the University of Southampton, are published this week in the Journal of the National Cancer Institute.

An example of the repurposing of the body's biological mechanisms involves fibroblasts. Normally, these cells make a range of products, such as collagen and elastic fibers, helping to fix organs and cells together. However, cancer can utilize these cells for its own purpose, turning them into cancer-associated fibroblasts (CAFs).

CAFs support a tumor as it grows and can help it spread. Earlier studies carried out at the University of Southampton have demonstrated that increased CAF levels are associated with poorer survival rates in a number of cancers, including bowel and head and neck cancers.

Recently, Prof. Gareth Thomas, who is chair of experimental pathology at the University of Southampton and his team embarked on a new project looking at the potential of a specific enzyme, called NOX4, to interrupt CAFs. This enzyme is essential for the conversion of fibroblasts into CAFs.

The team demonstrated that by blocking NOX4, the size of tumors in mice was reduced by up to 50 percent.

The drug that blocks NOX4 is currently being developed to treat organ fibrosis, which is a condition characterized by the formation of excessive fibrous connective tissue. If follow-up studies go well, it might be a useful medication to be taken alongside existing cancer treatments.

Full story:

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Lost in Transition: Meeting on 3 August

How do you transition patients from curative but damaging treatment to survivorship? Dr Kim Gear, oral medicine specialist, wants to be the ambulance at the top of the cliff while Dr Neil Croucher, Clinical Director of Oral Health admits that funding and staffing for follow up dental care is limited and patients should go back to private dental care as soon as they are returned to function after treatment. 

Dr Kim Gear

Today's meeting was about teeth, about the mouth, but also about survivorship in general for head and neckers. First speaker was Dr Kim Gear who is leaving Oral Health and running a new project through Ko Awatea* and ORL at Auckland City Hospital. She called in briefly to explain this new head and neck cancer initiative but I can give only a brief summary here. We hope to update you later. 

Dr Gear's idea is to create  a "survivorship hospital", not in one concrete location but as a network of services that will aim to keep head and neck cancer survivors healthy, especially in respect to their dental care. 

She would like to see integration between different services. After a "cure", there is often a void. There are long term side effects and a psychological impact. We need to take a broader view of health where psychological and physical are seen more as one. 

Follow up and screening are not always best in the hospital. A screening clinic with a broad, holistic view would be better. 

What about funding for these services? Kim quoted Earnest Rutherford: "We didn't have the money so we had to think."

She mentioned the "olive effect". Take one olive off the first class passengers and spread the savings around. We can do the same thing in hospitals. 

An example of smart spending is the treatment of osteoradionecreosis. $2.5 million a year is spent on this bone decay after radiotherapy. Hiring  a hygienist to keep patients' mouths bug free seems expensive in the short term but in the long term would SAVE money.  She recommends the Atul Gawande's book the Checklist Manifesto  which outlines how we can carry out simple steps to cut through the complexity of the modern world. 

Finally, it might be that we need to have private care with public funding. Meanwhile, because we need private care anyway, we need to come up with a list of dentists in the community (and perhaps hygienists) who have the skills and confidence to treat the radiotherapy-affected mouth. She suggests that we email all out members and ask for recommendations. Next month we can come up with a partial list of dentists.

AUT also has a programme where patients can receive free hygienist care from trainee practitioners.

Dr Neil Croucher

Our second speaker was Dr Neil Croucher, Clinical Director of Oral Health, based in Whangarei and speaking to us by phone from there. His voice came through the speakers loud and clear but he was only able to speak to us briefly.

Neil has two days a week in a clinical leadership role in Oral Health to deliver hospital dental care from government to population He used to be a hospital dentist specialising in special care and pediatric care. He is two and an half years into the role now and hopes to look back after five years to see an improvement in service delivery. 

His first major improvement is in gaining a maxillo-facial surgeon with 7.5 of a full time role;  in other words 7 1/2 sessions a week. Now their relationship with other clinicians, for example plastics, will be better. Secondly they have a new oral medicine specialist, newly trained, Hedley Clark. 

They have appointed a new dental technician who can make a variety of prostheses for areas like the eyes and ears. 

However rehabilitation for people like us is not sufficiently funded. Dentistry is the "forgotten son of medicine". We are entitled to only once episode of care after treatment to get us fit for the private service, not necessarily for the restoration of aesthetics. 

implants are available but patients are asked to pay lab fees. Implants are not likely for HNC patients. 


Head and neckers’ 20 year battle to get funded dental surveillance is ongoing. Kim’s project offers hope as does the Northern Regional Review of Head and Neck Cancer Services, the report from which is coming out in the next few weeks. In the review, patients were surveyed about their dental needs among a variety of other treatment factors. 


Many thanks to Kim and Neil for making themselves available to talk to us.

* Ko Awatea is the innovation centre at CMDHB (Middlemore)


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Does everyone want to be informed about their cancer?

Clinicians and patients often say that "not everyone wants the information". True, to a certain extent, but 1) those of us who do value information need to get it and 2) all patients need to be informed to give informed consent and manage their own care. This could be dealt with in a flexible way - different strokes for different folks. Each patient has to cope in the way they feel best but I think we should err towards knowledge, not ignorance. 

One of our members was horrified when she saw heard about the radiation mask so researched it. When she found out what is was for, she was able to cope. Fear of the unknown is often a more overblown and more painful  fear than a rational fear based on facts.  

Tommy Donbavand said in his great book about head and neck cancer, "Tommy v Cancer", that he didn't want to know but was forced to face the information when required to fill in a form. You can't really avoid the facts! Eventually you or someone close to you has to put that medical term to your condition. 


Some people in the Swallows book, Australian version, say that looking back, they wish they had asked more questions at the start. 


A man a plan a canal Panama

This brings me back to treatment and survivorship plans which in my opinion would help patients become more resilient. I would have appreciated a dental plan so that I knew the state of my teeth before and after treatment and a rough idea of how I could maintain my teeth and gums afterwards - plus my entitlements under Oral Health. 

Carers and whanau

Does it just have to be the patient who receives the information? Sometimes the traumatised patient doesn't want to hear the harsh truth but a carer needs to know what is going on. 

A delicate negotiation

"It's a process that needs to be negotiated with patients according to their wishes. Also need to consider 'others' ie family & friends who may be involved. Ideally should be open to those who need to know for supporting patient." (These words are from a clinician.)

Why it is a good idea for staff

There have been studies! Some show that patients who are fully involved in and informed about their care will take better care of themselves, thus reducing hospital admissions. 

Patients who are fully informed are less likely to choose expensive and perhaps unnecessary procedures. Knowledge can empower patients and as a side effect lead to a more efficient system.


Staff members from ORL in Auckland who set up the Auckland Support group had a superb idea. A social worker and speech language therapist set up monthly meetings over the road from the hospital and invited specialists to talk to the group about aspects of head and neck cancer. When they retired the group was ready for a change but what an enlightened idea it was to educate patients and survivors about the disease. As a support network we are carrying on the talks but want to reach out to head and neck people with a more general education plan.

Beyond Five

We have a helpful source of patient information just across the Tasman in the Beyond Five team whose website supplies the sort of clear information about HNC that is reassuring because it strips cancer of its mystery and shows how tumours can arise and how they can be eradicated.


In conclusion: knowledge of cancer is painful to confront but when the time is right, it demystifies the cancer and actually removes some of the fear. A better delivery of information to patients would enable patients to make more informed choices. Trusting patients to know their own information would break down the medical hierarchy where patients have historically been disempowered.

This has turned out to be an "Opinonator" rather than an "Investigator". I would like to hear what others think. 


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The after effects of cancer treatment are many - and  generally unpleasant. Keeping those effects to a minimum is often a major task with things like nutrition  and mental health to consider.  Just keeping fit and active can be a major challenge, but, as  the rather intense  article below indicates, it is worthwhile.


Resistance Training, Nutritional Interventions Prevent Muscle Loss During, After Radiotherapy for Head and Neck Cancer

(U.K.)_ Intervention with resistance training and nutritional supplements during and after radiotherapy is not only feasible, but may also prevent muscle mass loss and improve quality of life in patients with head and neck cancer (HNC), according to a study published in Cancer.

Radiotherapy is a standard treatment for patients with HNC, but patients who undergo treatment experience many adverse events (AEs). AEs such as mucositis and dry mouth can eventually lead to swallowing dysfunction, decreased food intake, malnutrition, and muscle loss.

This trial randomly assigned 41 patients with HNC to receive an exercise and nutrition intervention during radiotherapy (EN-DUR) or after (EN-AF).  Patients assigned to EN-DUR initiated treatment in the first week of radiotherapy and continued for 6 weeks. Patients in the EN-AF group initiated a 3-week intervention 2 to 4 weeks after radiotherapy. The intervention consisted of progressive resistance training (PRT) and oral nutritional supplementation (ONS).

Of the patients who initiated EN-DUR, 90% (18 of 20) of patients completed the intervention. Adherence to PRT was 81% and 57% for ONS. Of the patients who initiated EN-AF, 52% (11 of 21) of patients completed the intervention. Adherence to PRT was 94% and 76% for ONS.

Both interventions were effective in preventing the loss of muscle mass during radiotherapy, and there was no demonstrable difference in muscle mass between the 2 groups from baseline to week 14.

The  results show that PRT and ONS are feasible and effective interventions for patients with HNC receiving radiotherapy. The investigators conclude that “interventions both during and after RT appear to mitigate muscle wasting compared with standard care, calling for future trials to assess the feasibility and effects of extended interventions conducted throughout the treatment trajectory.”

Full story:

Scientists deliver knock-out blow to multiple cancers

(U.K.)Targeting healthy cells that have been hijacked by cancer cells could help treat many different types of the disease, according to research* funded by Cancer Research UK and published in the Journal of the National Cancer Institute

"We can see exciting possibilities for targeting CAFs in many patients who don’t respond well to existing therapies.” - Professor Gareth Thomas
Scientists found that targeting an enzyme known as NOX4 stops the action of a type of cell called cancer associated fibroblasts (CAFs), reducing the size of tumours in mice by up to 50 per cent.**

Fibroblasts are healthy cells whose role is to hold different types of organs together. When they are hijacked by cancer cells, they become CAFs and are known to help tumours grow, spread and evade therapy.  Until now, attempts to target them have proved unsuccessful.

In line with previous studies, the team at the University of Southampton  found that higher levels of CAFs were associated with poorer survival in several cancers including bowel, head and neck cancers.

For the first time, they identified that NOX4 is needed for CAFs to form and help tumours grow in many cancer types. But they could stop this happening by blocking NOX4 using a drug that is being developed to treat a condition called organ fibrosis.

These findings could form the basis for new treatments and help make cancers respond better to existing drugs. Cancer Research UK is now funding the Southampton scientists to see if this approach improves treatments like immunotherapy and chemotherapy to make them more effective.

Full story:

Common causes of head and neck cancer

(India) India is known as the ‘Mouth Cancer Capital of the world’ as around 57% cases of global head and neck cancers are seen in India. With more than 2,00,000 cases of head and neck cancers reported in India, tongue and mouth cancers contribute to more than 1/3rd of the cases every year. And the cause of this is attributed to the excessive use of chewable tobacco.

Dr Prashant Pawar, Head & Neck Onco-Surgeon, Fortis Hospital, Mulund says   tobacco is one of the most common causes of head and neck cancer. Time and again, it is been emphasised that excessive use of  tobacco including smoking cigarettes, cigars or pipes and chewing tobacco can lead to head and neck cancer. Not just this, even the use of smokeless tobacco is associated with head and neck cancer, especially oral cancer. So stay away from paan, paan masala, gutkha, bidis, cigarettes and other forms of tobacco to lower your risk of head and neck cancer.  

Full story:

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Diana and I spoke at an International Patients Day event in Auckland yesterday in order to describe the patient's experience of the treatment. The makers of the machines, Varian, were there and we were celebrating American technology for the US consulate. I had radiation as adjuvant therapy only - to mop up lingering cells after surgery. It was a tough treatment but I didn't have chemo and only one side of my face received the rays. This explains the somewhat upbeat account I gave in my speech here. 

I sometimes feel secretly jealous of head and neck cancer patients who can’t have surgery so have chemoradiation and emerge from treatment with the cancer gone, unscarred and reasonably functional. I know they have more gruelling treatment than I had. Nevertheless, the surgery can cut nerves and leave the face and neck never the same again as you can see with me.

I had radiotherapy in April 2014 after having my third primary squamous cell carcinoma removed in seven years. The idea was that radiotherapy would kill any rogue elements that were causing the repeated cancers on the left side of my mouth.

One common factor in patients all over the world is the excellent care they receive in radiation oncology departments. The oncology unit is an oasis of good design. There’s a concerted effort to get the patient through tough treatment. There are Cancer Society volunteers in daffodil yellow and walls adorned with thankyou cards. I personally love this concept where the Cancer Society and hospital staff work together to care for patients -the volunteer driver scheme is the epitome of this.

In the new world of medicine where patient centred care is becoming an increasingly popular philosophy, the radiation units set an example. I can speak only of the Auckland unit but I’ve heard there are places in the US where a hugs lady is available to dish out free hugs.

My Cancer Society liaison nurse said, “They will take good care of you”. The radiation oncologist read me a long list of deadly side effects and then said, “It is tough treatment but we get people though it” Phew!

Many patients find the mesh mask to hold our heads down very frightening, claustrophobic[MJ1] . At the Auckland unit, the technician and nurse talked me through the mask making process in a gentle, reassuring way. I was horrified to see a child’s mobile above the bed. “We make it fun for them, “said the technician. I thought, if a child can do this, then so can I.

My RT was one-sided only, my side effects were manageable and there were only three things that bothered me really.

1.     Transport. Would my family and the vol drivers get me there for the 30 treatments right across town? They did!

2.     Pain – no pain from RT itself but pain when the mask clamped down on the tongue depressor and stretched my stiff jaw. Solution – a judicious intake of Oxynorm before the treatment and a little rhyme to chant until the mask came off.

3.     Dental: I already had poor teeth and RT has made them worse. Can we do more to help people like me avoid dental decay and ORN? Still looking for answer to that one.

Some of our support network who received RT or RT and chemo – no surgery. Liz – back to almost normal after Stage 4 throat cancer; Teddy – no evidence of disease after long period of being refused surgery for base of tongue cancer because of heart condition; Cosette – like Liz, back to herself after serious treatment.

Last week was WHNCD. We set up a stall in a local hospital to raise awareness and show our support. Many similar stalls around the world featured a radiation mask in pride of place. Uh oh,  I forgot to do that The head and neck mask is the ultimate symbol of this cancer.

Thank you to Varian and the sophisticated technology that makes this curative treatment available.


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World Head and Neck Cancer Awareness Day has generally been rated a major success by organisers and observers alike; however, the news isn’t all great. Being aware is one thing and certainly helps in overcoming the disease, but straight medical treatment is the big gun and latest tests on one of the biggest calibre guns - the immunotherapy drug Keytruda -are not promising. Then there’s a story about U.S. insurance company blues which suggests battling bureaucracy is a universal challenge.

On a brighter note consider:
"Disney's original Snow White has got a good small mining business going, a loyal workforce she takes care of - why does she need a prince to come and save her? If she stays off the apples, she's all good."

I wonder if flying is enjoyable for birds, or if it's just like driving to work.

I dream of a better world where chickens can cross the road without having their motives questioned.

Merck Drug Shows No Life-Extending Benefit in Head-and-Neck Cancer
(U.S.) The first immunotherapy approved in the U.S. to treat head and neck cancer has failed a big test, but it’s unclear if the FDA will exercise its right to pull it from the market.

Merck (NYSE: MRK) announced that its blockbuster cancer drug pembrolizumab (Keytruda) did not meet its main goal of helping people live longer in a key trial, dubbed KEYNOTE-040. The FDA gave pembrolizumab a fast-track approval last August based on a subset of the 040 data that showed the drug was shrinking tumors. But the agency required positive results in the future, including evidence of a survival benefit over standard chemotherapy.

The approval is for patients with head and neck squamous cell carcinoma that has returned or spread to other parts of the body after treatment with chemotherapy.

The FDA approved nivolumab (Opdivo), from Merck’s top immunotherapy rival Bristol-Myers Squibb (NYSE: BMY), for the same patient population last November. Bristol’s approval was based on data that showed nivolumab improved survival by a median of 2.4 months over chemotherapy.

Merck said today that pembrolizumab’s approval for head-and-neck cancer is not in immediate danger of being revoked. “We have already discussed these data with the FDA and do not anticipate any changes to the current indication at this time,” a Merck spokeswoman told Xconomy via email.

Merck did not release data except to say that pembrolizumab did not meet its primary endpoint of overall survival. Merck also said that “no new safety signals were identified” and that the level of side effects was consistent with other pembrolizumab studies. It will discuss the data later at an unspecified medical meeting. The spokeswoman also noted that pembrolizumab was currently being studied in two other head-and-neck cancer trials; she declined to speculate whether data from those trials would factor into the drug’s continued approval.

Head and neck cancer kills more than 9,000 Americans a year, about the same as skin cancer. The top U.S. cancer killers are lung, colon, breast, and prostate cancers, according to the Centers for Disease Control.

Pembrolizumab is also approved for certain types of skin cancer, bladder cancer, lung cancer, lymphoma, and for patients with tumors that have a specific genetic fingerprint—the first time a drug was approved for a cancer’s genetic profile instead of the cancer’s organ or tissue of origin.

Full story:

Cancer-patient advocacy group says 'Fight cancer, not me'
(JACKSONVILLE, Fla. )- Many patients fighting cancer are also battling insurance companies' policies and processes that make it difficult or even impossible to receive proton radiation therapy that their doctors prescribe, according to the advocacy group Alliance for Proton Therapy Access.

Believing patients should be able to receive quick answers and fair treatment from insurance companies when faced with a cancer diagnosis, the group has started a campaign, "Tell Insurers: Fight Cancer, Not Me," and a petition drive.

"All cancer patients deserve access to the best available cancer treatment recommended by their physicians," the group wrote on its website. "Too many patients, however, experience insurance company delays and denials when their doctors recommend proton therapy. Proton therapy is an advanced form of radiation therapy that offers patients fewer side effects and improved quality of life."

Kathy Brooks has worked in oncology nursing for more than 30 years, and at Ackerman Cancer Center since 2015, so she understands exactly how difficult cancer treatment can be. When she was diagnosed with tongue cancer in 2016, she knew she needed proton therapy.

“Because of my experience as an oncology nurse, I knew that treatment for head and neck cancer is very difficult," said Brooks. "Proton therapy was my best chance to survive and have quality of life, but unfortunately my insurance did not approve it. Going forward with my proton treatment, I had to fight the cancer and with the insurance appeals process every step of the way.”

Full story:


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From Auckland, New Zealand. The Head and Neck Cancer Survivors' Support Network, at Waitemata District Health Board's North Shore Hospital.

Tammy von Keisenberg read the opening statement. Read more here.

In Australia, Brad Keeling shares his story of throat cancer and HPV. http://www.abc.net.au/local/photos/2013/01/24/3675792.

Julie McCrossin, launching the Swallows book in Australia, with some kiwi stories. 

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Opening Statement World Head and Neck Cancer Day 2017


Tena koutou,

Kia ora from Auckland, New Zealand.

We, the Head and Neck Cancer Survivor's Support Network are first to recognise World Head and Neck Cancer Day 2017. We welcome all patient groups around the world to connect, support and advocate for those affected by head and neck cancer.

As the day begins we acknowledge the aims of the day - to promote the effective care and control of head and neck cancer.

To do that we can all join together as patients, clinicians, families, carers and friends to:

  • Strengthen the health care system.

  • Introduce new approaches for awareness, risks, prevention and early detection.

  • Enhance expertise of health professionals by upgrading their knowledge and skills through continuing education programmes.

Let's make today special. Join together to share the events, fun, energy and innovation that is the head and neck cancer community.

 Noho ora mai,

from Aotearoa New Zealand.


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Hope for WHNCD

We all want to live in hope. Sometimes hopes for survival are dashed if the cancer has spread too far. Can there be any hope then? Not in the narrow sense of the word maybe but there are still many things we can hope for. We might have years; we might be able to live with the cancer. 

We can hope for good days, for good care, for a chance to make peace with life, to achieve a goal or fulfil a dream. We can hope for those few more good months or years where we can fulfill what we see as our role in life as a member of society, a parent or grandparent. 

We hear of people with Stage 4 head and neck cancer who proceed bravely through treatment because of the very realistic hope that surgery and chemo-radiation or just the latter will cure them. 

Doctors can give us reasonable hope. It pays not to deceive patients but give them a small hope at the very least to cling to when the prognosis is poor. There are always people who fall into the good side of the statistics: a 10 - 20% chance of five year survival can bring hope.

We can live in the now: a very good place to be. Who knows what the future will bring for any of us? 

And last of all we hope for better treatment, for earlier detection, for prevention, we hope for a cure for those who come after us. 

I think that hope is often elusive; it's a feathery, fluttery thing, a state of mind - expressed so well in Emily Dickinson's poem.  But Dickinson is also "reminding us of hope's inherent power--it is always there, requires no maintenance, and is strong enough to see us through our troubles." (https://www.enotes.com/homework-help/analysis-poem-hope-thing-with-feathers-by-emily-297521)

What do you think? 

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The American enthusiasm for litigation is generally regarded with incredulity by most observers so the lawsuit mentioned below probably shouldn’t come as a surprise, even if the option of cancer with hair - or no cancer, but no hair - seems like a no brainer.

More pertinent is the U.K. statement on HPV vaccinations and to finish off a few words on fibre.


This  is probably the first time in history where nobody is excited about what the future might look like in 100 years.  

Any dog can be a guide dog if you don't care where you're going

The best evidence that the universe is a simulation is the glitch of how often my stuff goes missing even though I'm 100% sure I know where I put it.

Taxotere Hair Loss Lawsuits Move Forward
(U.S.) Plaintiffs involved in litigation revolving around permanent hair loss from the cancer drug Taxotere recently learned the first case in their multi-district litigation has been set for trial in September 2018.

The plaintiffs involved in the litigation have claimed that they were not warned prior to taking Taxotere that it could cause alopecia, a medical condition in which the immune system attacks hair follicles, resulting in hair loss. While hair loss is often a common occurrence with chemotherapy, plaintiffs have alleged that Taxotere is far more likely to cause permanent alopecia compared to other equally effective cancer drugs.

Taxotere was introduced by Sanofi-Aventis in 1996. It was approved in the U.S. for the treatment of various cancers: breast cancer, advanced stomach cancer, head and neck cancer, non-small cell lung cancer and metastatic prostate cancer. Following the expiration of Sanofi’s patent in 2010, the FDA approved marketing of the generic version of Taxotere – docetaxel – the following year.

According to studies, the risk of permanent alopecia resulting from taking Taxotere is between 6 and 10 percent. Many of the plaintiffs have claimed that they could have taken other equally effective chemotherapy drugs that wouldn’t have resulted in permanent hair loss, but were never warned of the risks by their oncologists. The trauma of permanent hair loss for cancer patients is severe, a constant reminder that they remain victims of the disease.

Full story:

Teenage boys DENIED ‘life-saving’ HPV jab – putting ‘400,000 a year at risk of cancer’, charity warns
(U.K.) The Joint Committee on Vaccination and Immunisation today advised protecting boys against the cancer-causing virus is "unlikely to be cost effective".

Boys aged 12 and 13 in the UK should not be given the HPV vaccination to protect them from cancer, experts have advised. The decision not to vaccinate boys is part of "interim advice" from the committee, which is responsible for all vaccinations.

It will now go out for consultation before the final advice is published. But campaigners and charities are outraged at the advice, predicting up to 400,000 boys a year could be put at risk.

Girls aged 12 and 13 have been given the vaccination since 2008, as part of a drive to tackle cervical cancer rates. But boys have no protection, despite calls from charities, campaigners, parents and young cancer patients.

In their interim statement, the JCVI said the risk of HPV infection in boys has "already been dramatically reduced by the girls programme and these herd effects will continue to have substantial impact".

The committee responsible for regulating vaccinations say high uptake of the jab among teenage girls is enough to protect boys from the sexually transmitted virus, linked to cervical, penis, anal and head and neck cancers

But, critics have slammed the decision, branding it "shameful and short-sighted".

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High Fiber Diet May Reduce Risk of Head and Neck Cancer
A high fiber diet may reduce one's risk of head and neck cancer (HNC), according to research published in the International Journal of Cancer.1
HNC, which is diagnosed in more than 500,000 patients annually, is associated with tobacco- and alcohol-use, though vegetable and fruit intake are associated with a reduced risk of the disease.

The relationship between fiber intake and HNC was, however, previously underreported.

For this pooled analysis, researchers evaluated data from the International Head and Neck Cancer Epidemiology (INHANCE) consortium to determine whether fiber intake affects an individual's risk of HNC.

The authors noted that while fiber may reduce an individual's glycemic load, reduce systemic inflammation, or prevent carcinogens from contact with upper digestive tract epithelia, these results might be explained by the fact that “dietary fiber may simply be an indicator of a better general life-style pattern.”

The study suggests, however, that a “relatively” high fiber intake may reduce the risk of HNC. Further study is warranted.

Full story:

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Fred's partner, Olwen, tells Fred's story. 

It was mid 2015.  Fred (68) was a bit irked. He had a sore on his tongue at the side near the back. Eating chocolate hurt it and it was getting annoying. He told the GP about it at his three monthly appointment.  She took a look, and suggested it might be a fungal thing. She gave him a prescription for something to put on it.

When the prescription was filled the information sheet said you should not use it if you had an allergy which sounded a bit much like the polyester resin Fred had had a reaction to.  Consequently Fred didn't use it.  At the next doctor’s appointment in September he raised it again and the GP said she would have expected it would heal by itself normally and referred him for a biopsy at the hospital.

He had an appointment at the end of October at surgical outpatients at Wairau hospital in Blenheim. The general surgeon we saw looked in Fred’s mouth and declared that a biopsy from the back of the tongue was beyond her pay scale.  Luckily an ENT surgeon was visiting from Nelson and was able to fit us in and remove a sample of tissue.

We had a follow-up appointment with the ENT surgeon the following month when we were told that it was a T1 squamous cell carcinoma and  needed to be removed. This would mean cutting a chunk out of Fred’s tongue. He was scheduled for urgent surgery.

The next week (December 1,  2015) Fred was in surgery at Nelson. He was able to leave the same day, with a prescription for mouthwash and he felt fine.

Our next appointment was a few weeks later and we were told that test results showed that all the cancer had been removed.  However they preferred to take a little more.  The surgeon was going on holiday so this would probably be in February.

We were called in January and offered surgery with a locum surgeon at the end of the month so two months after the first surgery we were back in Nelson. Again Fred didn’t stay overnight in hospital.  

Three days later Fred slipped on a tiled floor at home and broke an ankle.  He spent a few nights in hospital and had his ankle in plaster.  

We got an appointment for a follow-up ENT appointment in Nelson.  I phoned and asked if this could be in Blenheim because the broken ankle made travel difficult.  The surgeon saw us about three weeks after the second surgery and said that all was well.  We saw orthopaedics for Fred’s ankle several times and ENT again in April.  

Sometime in May Fred felt ill while we were shopping.  Because we were almost next to the medical centre I took him there.  The doctor looked him over and was going to call an ambulance to take him to hospital but I said I would drive him.  They suspected heart problems, monitored and did a scan.  They found nothing and he went home that evening feeling better.

When Fred saw the ENT surgeon in April he had felt Fred’s neck.  Fred wondered about that and about the beginning of June noticed a few little lumps near the base of his neck on the left side.  We had an ENT appointment mid June and Fred showed the surgeon the lumps. I thought that we were supposed to be phoned with the results.  I knew that further treatment was likely and that this would be in Christchurch.  I asked if it could be Wellington where Fred had family but was told Christchurch was preferable.

Within two weeks he had a CT scan and a fine needle aspiration biopsy a week later.  We got copies of correspondence to Christchurch.  These were full of abbreviated medical terms.  I picked up enough to know that it was cancer.  

Along the way I had a phone call to ask if the surgeon had been in touch with us.  The person who identified herself as the surgeon’s nurse said that he had the results but she was not able to tell me them.  I phoned the GP’s office to get the results and was told that we needed to go in to get them.  I was offered an urgent appointment but declined it because I was expecting a phone call with the results and did not want to pay for an unnecessary GP’s appointment.

I did phone a few days after the initial phone call.  I spoke to someone else who said the surgeon would not have received the results yet.  The next contact was a phone call from Christchurch with an appointment in Christchurch for July 27.  They spoke to Fred. They asked if he was bringing a support person and he said that they seemed to assume he would fly down.

I phoned NMDHB to enquire about travel and was told that Blenheim patients were expected to drive.  At that stage (pre Kaikoura earthquake) that was a little over 300km each way.   As all we had at that stage was verbal notice I asked if she had a copy of the letter to us, so I was able to have that emailed. We were eligible for assistance with travel which meant submitting a claim to the Department of Health and being reimbursed a few weeks later.

I tried to research likely treatment.  It seemed that radiation was likely and might be over several weeks.  I worried how we would manage this.  I knew Fred could get accommodation, but if I went too our dogs would need to stay in a kennel.  If Fred went alone he would need money for meals etc.  We lived week to week on National Super.  How could we get by?

At this stage, no one had talked to us about the biopsy and scan results. Back then I didn’t know what I know now about SCC.

The appointment was for 10am.  We knew to allow several hours.  We drove down the day before and stayed with my sister and her family the night before.  The day of the appointment I had a minor melt-down in the shower.  “I don’t want the cancer to take my Freddy.”  I told myself I was being silly. Yes the cancer had recurred, but we had found it early and it was tiny.  They would fix Fred.

We had had a number of crises with Fred’s health.  He had been a heavy smoker.  He stopped smoking when he fell off a roof and broke his back leading to a few weeks in hospital.  He had surgery for that and was discharged from hospital early because of a junior doctor’s strike.  He had pneumonia when he was discharged but didn’t have a prescription for antibiotics.  He wound up along the way with cardiomyopathy and COPD.  He had always been a heavy drinker, and at one stage was in liver failure.  I didn’t expect him to recover from that, but he did, and he drank less, but still more than most other people. So now when Fred seemed in better health than he had been for years - there was no way he wouldn’t recover.

We arrived at the hospital on July 27 with time to spare.  In the foyer was a stall selling cupcakes with dark red and bright yellow icing. It was something to do with Head and Neck Cancer.  That had to be a good sign. ( I know now it was World Head & Neck Cancer day and those were probably an attempt at the colours for Head & Neck Cancer - burgundy and ivory.)  We found our way through the hospital and reported in.  We met a young doctor who told us she would present Fred’s case.  We met a coordinator who showed us the room where the meeting would take place.  There were lots of seats and morning tea was laid out including cupcakes like the ones I’d seen for sale.  I was impressed.  All these people to see us, and morning tea.  We were shown a book Fred would be given with his treatment plan.  Then we were asked to wait in the corridor and told to help ourselves to tea or coffee.

Other people arrived and were waiting in the corridor too.  Professional types arrived and entered the meeting room.  It was only gradually that I realised that the others around us were there for the same meeting.  People went in and came out,  Several had their treatment discussed with them in the corridor.  We could not avoid hearing that one man was having his eye removed, another all his teeth, and someone a bone from his leg. Those treatments seemed awful. How lucky we were that Fred’s case was so minor.  No wonder they were leaving us till after these serious cases.

Sometime around 12:30 people started to leave the meeting.  They must be people who didn’t need to be involved with a minor case like Fred’s.

A couple of doctors came and took us into another room.  They had trouble finding Fred’s notes.  When they did, almost the first thing they said was “palliative care only”.  I didn’t take in much of that meeting.  Fred told me one was a radiation oncologist and the other a chemotherapy oncologist.  We were told that chemotherapy was only about 20% effective.  Fred would be referred to the GP for painkillers and district nurses.  It seemed surreal.  Fred was not in pain and his health seemed better than it had for years.  They asked if we were driving back to Blenheim that day which we were.

We stopped off to do a little shopping then hit the road home.  Fred just wanted to get home but I was driving and needed a stop.  I still don’t know how I managed the drive home.  I was driving into the setting sun and it was dark before we made it back to Blenheim.  What did we have for dinner that night? I don’t remember.  It might have been cheese on toast.   I think we bought wine at the supermarket.  Two days later we had a phone call from the coordinator in Christchurch.  I was not polite.

We saw the GP the following week.  Like us she was in shock.  She phoned oncology and I had a call from an oncology nurse that day.  I was expecting an urgent oncology appointment but when I phoned later I was told that they didn’t know anything about Fred.  The following week we had an appointment with the ENT surgeon, he referred us to oncology and we got an urgent appointment the following week.  The oncologist explained Fred’s CT scan.  She made a referral to the oncology social worker.

The social work referral was of little use.  The social worker could not understand why palliative care was being suggested for someone as well as Fred.  I asked about an advanced care directive and he said that GPs hold “do not resuscitate instructions”.  I asked about counselling.  He suggested an agency for me to phone for myself.

We knew that Fred would need a will but could not afford to spend several hundred dollars to see a lawyer so I wrote one and we took it to community law.  They said it would need changes and I made those a few weeks later.  Getting organised to sign with witnesses seemed hard.

I had arranged a second opinion from an Auckland practice.  They suggested radiation and chemotherapy.  One of the treatments (Cetuximab) they suggested turned out not to be funded although Pharmac had flagged it as high priority for funding.

We saw the oncologist twice more.  When I suggested chemotherapy  to slow progress she said he was too well for treatment.  I still don’t know why she said that. His breathing was more difficult and thick phlegm made eating hard.  Fred was losing weight and hope.  Fred had a low dose of liquid morphine, prescribed by a doctor in the GP practice, to help breathing.

He was deteriorating and drinking.  He became weaker and confused.  I took him to ED on the Monday and they prescribed Mucinex for the phlegm - a prescription I didn’t fill because Fred was seeing oncology the following day and it was another unfunded treatment.  It was suggested to me that a nebuliser might help with breathing which was what bothered Fred most.  The oncologist referred Fred to hospice for help with breathing and arranged an urgent scan and an appointment for two weeks ahead.  

The hospice nurse visited us on the Thursday to enrol Fred.  We discussed the unsigned will and were to address that the following week with social workers. She took some readings while she was there. Fred’s pulse was racing.

It was arranged that I take Fred to ED.  He was confused and wanted to go home.  He pulled the line out of his arm. They told me I could take him home. I said I could not handle him so they kept him.  He was agitated and needed to be sedated.  When I went in on Friday he was barely conscious.  The nurse told me that his electrolytes were out of balance and they could not get them right. They took him for a scan and I had to sign the authority because he could not.  I still did not realise that this was the end.

He was unconscious when I saw him on Saturday.  In the early hours of Sunday while I was asleep, the hospital left a message that he was in the early stages of death.  I spend most of Sunday there leaving early evening to have a meal and feed the dogs.  While I was doing this Fred slipped away.  Exactly four months after that awful meeting in Christchurch.

In many ways I'm grateful that Fred missed out on some of the awful head and neck cancer treatments. Fred loved food for example. He would watch a TV program and have to try things (mostly he was the cook) or we would go to an op shop and buy a couple of recipe books. If we came up with one good idea it was worth it for the pleasure we both got from a new flavour combo. When he was choking on phlegm he was distressed by the breathing - which felt like drowning - but also by difficulties in eating.

After Fred’s death, I sent an email to oncology saying that Fred would not attend further appointments.  I followed this with a phone call the following day. They did not know Fred had died. A week later I had an email from the nurse we had as a contact point (she had been away).  

Our GP sent a sympathy card.  She has been terrific through all of this. I wish for the sake of others that the rest of the medical system had been like her.  

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Next month’s Auckland Meeting

This will be on 3 August, 9.30 to 11.30 at Domain Lodge.

Our speaker is Dr Neil Croucher who will address us via Skype. One of his Oral Health colleagues who works at Greenlane will attend the meeting. Dr Croucher is the overall manager of Oral Health at Greenlane, Middlemore and in Whangarei. Prepare those questions you have been dying to ask about your entitlement to dental care after head and neck cancer treatment.


Not long until WHNCD! Here’s a reminder that we have a stall at North Shore Hospital between 10 am and 2 pm. Some of you have already agreed to attend but everyone is welcome. We have a lot of informational posters and brochures as well as free samples of dental products from Smile Store and Oral 7. There might be free samples of light-up tongue depressors called Throatscopes. I’m not 100% sure of the giveaway status but have been promised that I will get one myself, so you never know.

 Dr David Grayson who has many important roles at the hospital will be there. He is interested in innovation in medicine and in how to engage patients in their own medical care. Because he is also the Clinical Director of ENT, he will be able to give passers-by a free screening if they so desire.

 David is also interested in social media. How can the medical community connect among themselves? How can patients be part of that process? He is arranging a tripod for phones so we can Facebook Live and Periscope at least the opening of the stall.

 WHNCD started in the US and is now observed by over 50 countries in the world. Guess who will be the first country to mark this day? Yes, we are going to read out a statement to greet the world and express our shared desire for more education and better treatment for head and neck cancer.

 Next year we will have a stall at Auckland City Hospital too. This year is just the start of our push for world domination.

 Our team

You might have noticed that our website is looking classier these days. That is because of the work of Olwen Williams from Blenheim. Olwen’s partner, Fred, died last year after being diagnosed with tongue cancer. Olwen found us, eventually joined the committee and and has worked on all our IT material and graphic design. She has made us charts and pamphlets, a banner and business cards. She came up with the stylised tui we use in our logo.

Olwen is retired, in her late 60s and an early adopter of information technology.  Some of you might be old enough to remember the computer programming aptitude test young people were given in the 60s and 70s. This was before computer skills courses and was designed to see if people had the mental skills to work in the new field of programming. Olwen was one of them. She developed an interest in graphic design when websites became the norm and had to be laid out nicely. Right now, we have asked Olwen to design some infographics for us as well as some “inspirational” quotes and poems. I sometimes find these annoying but if we make our own, they can be more believable and realistic.

Here is Olwen’s first quotation graphic made just for us. I think it sums up how a lot of us try to live the best lives we can in the circumstances we find ourselves in.

 More news

Our Chair, Diana, is progressing well after her recent surgery. Stitches out, she is back on her computer networking to raise awareness for Head and Neck Cancer Day.

We have sent 10 patient care packs to Auckland City Hospital to mark the day. These are prototypes only but we hope we gain enough funding to supply them to all new patients.


Read more…

One of our members, Bernard, speaks in the video within this Nelson Mail article. He and his fellow throat cancer survivor speak out about the challenges of finding a new life after cancer and the need for males to be vaccinated against HPV. 


Read more…

The head and neck cancer patients and carers I met at the Auckland Support Group in 2014 were pretty tough and staunch. I'd attended other support groups where there were tears and tender feelings but the head and neckers were quiet about their feelings and just wanted to learn more about the disease and enjoy the feeling of being silently supported. I don't know why our group is still quite matter of fact in its approach to cancer; maybe it is because we tend to be in an older age group where we're more philosophical about our mortality and there is a good mix of men and women. It might be because head and neckers have to be tough. The disease takes so much from you that for many of us just coping from day to day is challenge enough. 

Recently the Swallows Charity in the UK made an arresting chart showing 23 issues and fears head and neckers cope with. We surveyed our group and came up with a similar list but with more emphasis on dental problems, Here is the Swallows list 

And here is the one that Olwen Williams did for us. 

These are arresting charts but how will they help us? We don't want pity. What do we want? An acknowledgement of how hard it can be for some of us to get through each day? The Swallows chart was made to analyse the issues and see what could be done to help people with them. We can do that too. We are always advocating for better post treatment dental care and we discuss how to deal with dry mouth endlessly. But what about the other distressing issues like loss of social eating, self consciousnesses about disfigurement, loneliness and worse of all the loss of voice. 

The funny thing about loneliness  is that you can feel it even when you are surrounded by family and friends. No matter how much support people give you, they can't go through the treatment for you. Rarely do we know another person well who has been through the same thing. 

This is where support groups come in - either in person or online. We can provide understanding and support, raise awareness and advocate for better treatment. 

Groups like us can "raise the volume of the unheard voice".  We note the work of  Emma Burns and her laryngectomy support group in Nelson.

As far as advocacy for better treatment is concerned, it's also good to see the push for HME filters for laryngectomees by SLT Carlene Perris, Cara McCarthy from Atos and our own Tammy who has presented very strong arguments. This is an example of people looking at the issues and coming up with some mitigation of the problems listed above. 

On the eve (almost) of World Head and Neck Cancer Day, I just want to point out the long term issues many head and neck people face. It's why we're here.

What do you think? 


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Swallowing Issues

This is an extract from a 2015 newsletter of a meeting at Domain Lodge. Swallowing issues do not go out of date.

Speaking today was head and neck surgeon Dr Bren Dorman from the ORL department. His talk was on swallowing issues and consisted of
videos as well as slides. The videos were of scoping procedures within the hospital clinic or the ward, showing swallowing tests and impediments to swallowing as well as some of the treatments offered.

Patients in the videos had had mostly glossectomies or laryngectomies.

Extent of swallowing problems
Swallowing problems (dysphagia) can be experienced by anyone, not just head and neck patients. However, the problems experienced by head and neck patients are significant. A 2007 study of people who had surgery, radiation or chemoradiation found that many patients struggled considerably four years
after treatment. 50.6% experienced dysphagia, more patients (72.4 %) struggled with solid food. 57.1% needed nutritional support while 20.3% developed malnutrition.

What swallowing involves
Swallowing includes more than we think. It involves oral preparation of the food in the mouth plus manipulating and positioning it with the tongue. Saliva is needed. (In my case I can swallow liquids easily but solid food gets stuck in my mouth so technically I have a swallowing problem.)

I found this quotation on an SLT site that helped me understand what Dr Dorman said about the importance of the larynx and vocal folds to swallowing.

Swallowing is a complex and coordinated activity that requires various muscle groups and other structures, including the larynx, to function in a swift and coordinated manner. When this doesn’t happen, often this can result in food or liquid falling into the trachea, known as “aspiration.” This is what happens when a person chokes.

Food has to go down the food pipe (the oesophagus) not the windpipe (the trachea) but if the normal safeguards are not working, food can go down the wrong way. The epiglottis, which acts as a sort of trapdoor, is important for this as are the vocal folds of the larynx and the upper oesophageal sphincter.

The causes
Loss of organs like the tongue and the larynx can cause swallowing problems. Flaps are great but they might not move and could therefore make swallowing difficult. Initially the flap is quite swollen and may take weeks to months to shrink. The loss of functioning salivary glands through surgery or radiation also has a big effect. Radiotherapy can “cook” salivary glands, which will affect ongoing production of salivary secretions.

Effect of radiation on swallowing
Radiation treatment has many side effects which hinder swallowing. Some are:
* Pain or odynophagia
* Trismus: difficulty with mouth opening
* Thick secretions
* Oesophageal stricture and stenosis (scarring)

Surgical treatments like any tongue or mouth surgery can have an effect on preparing food in the mouth.

Swallowing Tests and Treatments
Endoscopic examination is that lovely procedure where you have a camera on a flexible tube poked up your nose and down your throat. You can also get a Functional Endoscopic Evaluation of Swallowing or FEES which is easily done by the SLT in the clinic.

Balloon dilation can also be done this way. If the oesophagus is narrowed by scarring, it can be dilated with a syringe driven expander opening the oesophagus by splitting scars. This procedure can be performed in the clinic under a local anaesthetic or in surgery under a general anaesthetic.

Dr Dorman also showed us a video of a modified barium swallow using a special movie-type x-ray. The patient had had a total glossectomy. They were looking to see if fluid went down the oesophagus or was aspirated.

He showed a FEES procedure where the patient had to swallow blue-dyed pear puree to see if it went down the right way. If there’s a suspected nerve problem the doctor can poke the area with the camera to test for sensation. This process should stimulate a cough

The patient is told to do a safe swallow, for example, “Look at the right armpit” if there is a problem to the right side.

With larynx cancer a little valve can be put in with a scalpel via endoscopy. Some solutions can be carried out in the clinic with a local. Some patients can tolerate this and some need general anaesthesia. There is no right and wrong.

One video showed that one of the vocal folds didn’t close properly. They need to close for successful swallowing.

Questions and Answers
How to deal with a dry mouth
You can stimulate any remaining salivary glands with something like citrus, although as Esther pointed out this can be damaging to the teeth. To deal with dryness itself any oil will help if placed in the mouth. Esther mentioned rice bran or flax seed oil. If you don’t like oil then you can use butter or margarine.

Pilocarpine is a saliva-increasing drug but it hasn’t been successful because of side effects.

Chewing gum and lozenges help. It’s the movement that helps the saliva. Bantu in the Kalahari Desert used to suck a stone in the mouth, while one patient found that tiny bits of carrot held in the mouth helped her keep her mouth moist. Coffee and strong teas cause dryness.

Read more…

Given the advances in gene therapy, robotic surgery, proton treatment and more it’s possible to imagine the  tide has turned in the cancer battle.  And maybe it has, but those advances usually come with a caution mainly added as an afterthought in most popular media reports.   Progress is being made, but as the last few paragraphs in the stories below indicate the fight will be going for a while yet.


Trans oral robotic surgery saves public hospital patients from disfiguring procedure at Nepean Hospital

(Australia) The cancerous tumour growing at the back of Brian Hodge's tongue was about as hard-to-reach as cancers get. 

The 73-year-old was told he'd need radical, invasive surgery to remove the 50¢-sized tumour. His surgeon would make an incision almost from ear-to-ear and split his jaw in two for the 10-12 hour surgery.

After five days in intensive care, another three weeks in hospital and four to six months recovery, re-learning how to eat and talk Mr Hodge would have been left with disfiguring scars, and a voice that he may not recognise as his own. 

"My kids didn't want me to have it," Mr Hodge said. "But I'm not one to throw in the towel ... Then the unbelievable happened," he said.

Mr Hodge became one of the first public patients to undergo robotic surgery for head, neck and throat cancer at Nepean Hospital, the state's only hospital offering the service to patients who can't afford private healthcare. 

Mr Hodge's surgeon, Associate Professor Ronald Chin, performed the trans oral robotic surgery (TORS) by guiding the robot's arm into his patient's open mouth to remove the cancerous tumour. 

"I went in on Monday morning for the surgery and I was discharged Tuesday night," Mr Hodge said of his surgery performed on June 19.

"It's just amazing. Two days compared to six months recovering." he said.

TORS is available for private health patients in other NSW hospitals, but its use at a major tertiary hospital in Sydney's west – surrounded by suburbs with some of the highest smoking rates and lowest private health insurance rates in Sydney – was significant. 

"It's an enormous step forward to be able to offer this state-of-the-art treatment with such obvious benefits both cost-wise and [avoiding] disfigurement-wise ... to patients who may not have previously had the resources to access it," Dr Chin said. 

"With TORS, patients can go home the next day [with minimal discomfort]," he said. 

More than 400,000 cases of oropharyngeal squamous cell carcinomas are diagnosed each year worldwide. 

The five-year survival rate for head and neck cancer in Australia is 69 per cent, according to government estimates.

Nepean Hospital would see between 10 and 15 patients with head and neck cancers per year who would be suitable for TORS, Dr Chin said.
Robotic surgery costs significantly more than traditional surgeries. But Dr Chin said TORS could save the public health system up to $100,000 per procedure, where patients no longer needed to spend days in ICU, costing more than $3000 per night, or weeks in hospital.

The robotic surgery is primarily indicated for patients with oropharyngeal carcinomas of up to four centimetres in size. Roughly one-third of TORS patients will not need chemo and radiotherapy.

Full story:

Proton Therapy Is Finally Here, Now What? 

(U.K.) IT’S been three years since proton therapy was thrust into the UK’s spotlight, following the case of Ashya King. 

Little Ashya was just five when he came to the Proton Therapy Center (PTC) in Prague for treatment to his aggressive brain tumour.

At the time his case sparked a fierce debate - should parents be given the final say on how their child is treated?

Now, the technology is back in the spotlight. 

But this time it’s as Manchester’s Christie Hospital becomes the site of the UK’s first NHS-funded proton therapy machine. 

The capacity for the new proton therapy centres set to open in England - including one at University College London - will be for less than one per cent of all UK cancer patients.

Their focus primarily will be on paediatric cancers and cancers in the head and neck.

At the PTC, our patient numbers have more than doubled year on year since we opened in 2012.Last year we treated 800 patients, including a large number from the UK and Ireland. The vast majority of these patients funded their care privately as they were rejected for funding on the NHS.

Traditional radiotherapy uses high energy beams to target and kill cancerous cells but in the process surrounding tissue can also be damaged. This can lead to side effects. 

With proton therapy, high-speed particles are targeted at the cancerous cells with pencil-point precision. Once they hit the cells they stop, sparing the healthy tissue surrounding the tumour. 

Despite this, doctors in the UK are still reluctant to acknowledge the benefits of proton therapy over existing radiotherapy techniques in many cases, especially when it comes to reducing side effects. 

In the last three years, the NHS spent £43.4million sending 489 patients to countries including the USA, Switzerland and Germany for proton therapy treatment. 

Almost three quarters of the patients were children - making up 342 of referrals. The technology has proven to be particularly effective in young patients whose organs are still developing and in combating tumours that are close to critical structures. 

Full story.

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Gillies Hospital: WHNCD Events

Here is another WHNCD event in Auckland next week.

Gillies Hospital, a Southern Cross hospital in Epsom, is having two WHNCD events.

On the day itself, 27 July, they are having a staff red shirt fundraising day.

Prior to that, on 24 July from 6 pm til 8 pm, they are holding a Head and Neck Forum for General Practitioners.

The following topics will be covered

  • Thyroid Ultrasound by Dr John Chaplin
  • Using a Robot for Head and Neck Surgery by Dr Andrew Cho 
  • Sialendoscopy by Dr Francis Hall
  • Thyroid FNA by Dr Nick McIvor
  • KTP Laser Treatment of Early Laryngeal Cancer by Dr David Vokes

Gillies Hospital
160 Gillies Ave
Auckland 1023

RSVP: admin@gillieshospital.co.nz

Light refreshments will be served.

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Multi-discplinary Meetings

Multidisciplinary meetings, those panels we front up to after diagnosis. A room full of doctors and other health professionals who are going to decide our treatment and hence our fate. I've been to two: in the first there was a semi-circle of clinicians standing around the edges of the room and my husband and I sat in the front. Four years later I sat on a platform by myself while the "audience" sat in seats in front of me and, I think, looked at a screen of my results. I was literally crossing my fingers and watching bemused while a nurse patted my shell-shocked son on the back.

Appearing in front of a panel like this is not the norm in other countries or for other cancers. Some people hate the idea. I quite liked it because I figured I'd get the best chance of good treatment if people could actually see and feel my lesion and discuss it afterwards. I think there could be better practices after the meeting. I'd like to know more about why certain decisions are made, but I feel it is a unique opportunity to be seen. What do you think?  Below is a definition of the meeting.

multidisciplinary team meeting is a deliberate, regular, face-to-face (or videoconference) meeting involving a range of health professionals with expertise in the diagnosis and management of cancer. The purpose of the meeting is to facilitate best practice management of all patients with cancer.


Following is a summary of a Auckland Support Meeting in 2016 when clinical nurse specialist talked to us about MDMs. 

Multidisciplinary Meetings. They’re the bane of our lives, terrifying and overwhelming and Vicki was here to explain why multidisciplinary meetings are the way they are. She explained why they struggle to change them.

An MDM is used for many illnesses but it’s unusual to have patients attending. HNC patients attend these meetings because their cancers are visible and doctors gain b seeing the cancers in the flesh.

Who attends the MDM in Auckland?

The meetings are attended by patients and medical people from the four DHBs in our region: Northland. Counties Manukau, Waitemata and Auckland. They can get referrals from other regions like BoP, Hawke's Bay or Waikato.

Private consultants also refer because most HNC cases should be discussed at an MDM.

The team at Auckland contains many different specialists.  If you're from out of town you might see the anaesthetist later in the day. A team of anesthetists come over to see to up to four patients.

Time to prepare

A radiologist looks at all imaging sent in again, even if has been looked at locally. A pathologist looks at all the slides obtained. (Some are even sent over from Rarotonga.) It’s reassuring to think that diagnosis does not depend on ONE person's knowledge.

As well as the medical team, there is a large clerical team. The MDM coordinator would take 30 plus hours to arrange one meeting. For example asking for pathology slides takes work from clerical people in two locations. Posting or couriering these slides can take days. They need the physical slides on site well beforehand. It takes a week to get ready for a MDM.

Number of cases

Seven to 8 years ago there was no limit but now they can’t cope with the sheer numbers. They can see only 10 cases ​from 8 am to 12 pm. Doctors have other responsibilities and have to move on. As well as the ten patients they see, other patients’ routine 6 ­monthly scans and other issues are also discussed. They could discuss 30 - 40 extra people, as well as the ten who are seen.


Patients get there at 8 am. Doctors start at 7.45 after their ward rounds or travel. Some patients arrive very distressed. Nurses sort out distress, smoking cessation, get a dietician to see them, organise pain control. Staggering patients’ appointments was tried but didn’t work.

When patients go into the room, they are confronted with about 15 faces looking at them. It’s very hard on patients, but one examination is now conducted that everyone can see and doctors can give feedback very quickly. There is a booklet for patients. 

Medical information continues to be an issue. Some people don't read the medical information. How much do we give and when? What format? It’s the same with information sheets on big surgeries. 

The other problem is that no two surgeries are the same. When electronic health records are in place, Vicki believes that the delivery of patient information will get better. It will also be easier to care for patients when they can see records from Northland etc faster.

 National Collaboration

Over the last 15 years since the introduction of DHBs in 2001, each area has done its own thing.  Now there is a movement towards a more global approach with the MoH providing National Standards. There is now a time frame from government. For example, after seeing your GP with a cancer, you should be seen by a specialist within 14 days. After the decision to treat, only 31 days should elapse.

Sadly, we have had at least two patients in our network, in different parts of New Zealand, who have made the long trip to go to the multidisciplinary meeting, full of hope that a treatment plan would be drawn up, only to be disappointed. Their appearance before the panel was cancelled because of health issues. They were not aware that these issues disqualified them from the meeting and felt let down. A double whammy: no treatment and no warning that they would not appear before the panel but would be seen by one or two doctors to one side or after the meeting. There might be good reasons for the cancellation but from the patients point of view this is very hurtful, even humiliating. 

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The Auckland campaign for World Head and Neck Cancer Day will include free screening of the head and neck on 26 and 27 July. So far we are not aware of screening in other New Zealand centres. 

Auckland Head and Neck Specialists, who operate at Mercy Ascot Hospital, are providing two screening sessions on the day before WHNCD. This will be on 26 July. The free screenings will be at their Takapuna and NorthCare branches on Wednesday 26th July. You can ring them at 09 6302920, email at info@ahns.co.nz or see their website, www.ahns.co.nz

On the day itself, screening using a Throatscope will be provided at North Shore Hospital between 10 am and 2 pm. The point of contact will be the stall we are setting up in the foyer with clinical director of ENT, Dr David Grayson. 

Feel free to drop by at any time within that time frame.

A new tool to make screening the mouth easier, the Throatscope is a tongue depressor that lights up.  Early arrivers might be able to take one home to use themselves. (We might have free samples.) 

Like most cancers, head and neck cancer is eminently curable if caught early. Sometimes its first signs are found in the mouth and sometimes a lump in the neck is the first indication. 

Next year we hope to have a co-ordinated campaign throughout the country but this year, only our second since we established the network, we will have to limit our endeavours to Auckland. We hope the awareness of the disease that we raise will benefit people throughout New Zealand and beyond. 

Meanwhile, our network is fundraising. We want to raise enough money to cover our monthly website and stationery costs as well as for patient care packs for new head and neck cancer patients at multidisciplinary meetings or hospitals throughout the country. 

We have all suffered directly or indirectly from head and neck cancer and know how significant a helping hand and contact is when the treatment starts. You can open the link below to donate to our Givealittle account. Don't be shy. Every dollar counts. 


In other news, I hope you have seen the stories our members have contributed over the last few weeks. Shane (Bay of Plenty) wrote about his experience with baso-squamous cell carcinoma and Cosette (Christchurch) about her chemo-radiation for throat cancer. Andrew (Whangarei) wrote about the HPV virus and the need for vaccination, while Kathryn (Whangarei) wrote about being a caregiver.

These are all compelling stories and well worth the read. You will see them all right here on the website. Feel free to comment. 

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A new normal: Shane's story

Only 10 days until WHNCD and here is another patient story to raise awareness of the disease and how patients experience it. Shane was diagnosed with Baso-Squamous Cell Carcinoma, a variety of head and neck cancer that started on the skin. His disease has been persistent but he has risen above it each time as a result of complicated surgery  (nerve grafts and gold weights) and his own strength and courage. He had a difficult path to diagnosis which goes to show that sometimes the patient is the expert. 

An interesting term I have run into during my cancer journey is the term ‘a new normal’. I have heard many times that things will ‘return to normal’ after MOHS (skin) surgery or similar dermatological procedures. A ‘new normal’ was a little different.

Things like numb patches, aches and pains, bald spots and bits that are missing plus the obligatory scars that now have to be faced and worked around give us the term ‘a new normal’. Basically it’s how your body works and feels after major surgery.

My new normal has recently changed again after my last round of surgery. My morning starts with painfully stretching my left shoulder after sitting up on the side of the bed. Gradually with some basic stretching, movement returns and the pain slips away. I also have exercises to do for physiotherapy through the day that I sneakily do while I think no-one is watching; pinching my shoulder blades together and shrugs to help teach my shoulder muscles to hold up my left arm. I have even taught myself to do my exercises while driving. It is early days for this one and I will stubbornly keep using it as I always have and I fully expect it to come back.

I am reminded again of my new normal as I sip my coffee, or slurp my coffee as I cannot control the left side of my mouth. Generally I try to drink from bottles or use straws, especially in public; relieving me of the embarrassing noises and dribbles down the side of the glass or mug. Thankfully I have learned that if I take small sips, slowly, I can have a drink, so it’s not the end of the world.

Unfortunately it’s not just my mouth. I lost the use of the whole of the left side of my face when my facial nerve was removed starting behind my left ear. Through a very clever nerve graft I have a very rudimentary smile on the left side but I can’t raise my eyebrow or wink; even blinking took the addition of a gold weight to my top eyelid. One hangover of this is that occasionally my left eye ‘plays up’ and gets watery and sore and I have to keep a handkerchief nearby to wipe away the tears. Occasionally a couple of eye drops will give temporary relief and it generally goes away overnight.

My new normal has been the result of an 28 month battle with a nasty little Baso-Squamous Cell Carcinoma that started in the pre-auricular region of the left hand side of my face. A battle that could have been shortened significantly if I was listened to at the beginning.

In February 2015 I returned to live in New Zealand with my wife following in March. With me came what I thought was a slow-to-heal site of a previous (3rd time) excision for a small Squamous Cell Carcinoma on the tip of my nose. Over the next two months the wound did not heal and doubled in size. The 3rd excision on this site was unsuccessful and we were 5500 kms from my dermatologist. We contacted my previous surgeon and thankfully we were recommended into very good hands locally. April 2015 saw us face my first big skin cancer surgery.

A large portion of my nose was reconstructed using some cartilage from my ears during a Forehead Flap procedure to remove the SCC that remained after previous treatments. After this procedure had settled I was facing my first round of radiotherapy - a six week course, just to make sure there was no remaining microscopic disease in or around my nose.

Early in the radiotherapy treatment I mentioned to my oncologist that I had a very painful spot in front of my tragus (the little lump on the front of your ear) that I couldn’t sleep on. At this point there was nothing to feel or see. I was told it was nothing, it would pass.

I mentioned this again in following meetings and got the same response. During my first appointment after radiotherapy, my one month checkup, I mentioned it again. This time there was a long, thin lump that felt about an inch long running vertically in front of my ear.

It’s nothing, I got told. Couldn’t be from your nose, cancer doesn't act like that. Don't worry about it. It can’t be cancer.

At my three month check up the lump was larger again, it was visibly noticeable and about three times the diameter. My oncologist had a closer look but the answer was the same. Couldn’t be cancer. It's not doing the right thing. I had pain when pressure was put on my ear, I was having trouble chewing properly and my teeth were not lining up. Based on these symptoms I was sent for a fine needle aspiration under ultrasound - a procedure I later found out was extremely unreliable.

The results from this procedure were phoned through by my oncologist. A negative result. My symptoms had kept developing but I was told again that it was nothing to worry about.

I contacted my oncologist by phone about six weeks later to tell her that things were still progressing. The lump in front of my ear was now thicker than a pencil and painful. I was having trouble eating and my left ear was completely blocked.

Mid November 2015 I was finally sent for a surgical biopsy with a local orthodontist and the result came back positive. Baso-Squamous Cell Carcinoma. Aggressive. Ten days before Christmas 2015 I was having a parotidectomy (removal of parotid gland in front of ear) and stage two neck dissection in Southern Cross Hospital in Hamilton. This procedure left me with a scar from above my temple, down the front of my left ear, along my jawline and down my neck. I lost a lot of the control of my bottom lip on the left hand side that was mainly noticeable when I tried to smile and felt far worse than it looked.

The surgery was followed up in February 2016 with my second round of radiotherapy. A six week course of high-dose radiation from two inches above my ear down to my collar bone. I permanently lost the hair above and behind my ear and temporarily across the back of my head. My new normal gave me some very tight ringlets when the hair across the back of my head grew back, an interesting look when trying to grow long hair to cover the scars ...

My three month check up with the surgeon was a great place to be. I had been for an MRI a week prior to my appointment and I was told I was clear. I haven’t looked at the scan, I was told. But the report says you are all clear. Very good news.

It feels sore like it did before surgery, I told the surgeon. The scan is clear, was the reply. Things are settling after surgery. It’s to be expected. I walked out feeling elated. Free of the fear but hoping the painful healing would be finished soon.

The worsening pain and my chewing getting difficult plus the fact that my ear canal was closed again concerned me but I clung to the belief that it was part of the healing process. For the first time in my life I was regularly taking pain relief but it was healing pain so it was okay.

When I was taking the maximum dose of over the counter pain meds and not getting relief, waking up during the night in pain and having to take meds to go back to sleep, I decided to speak seriously to my oncologist. By this stage my chewing was worse than before surgery, my ear canal was completely blocked again and I was struggling to get relief from the constant ache. I was given a script for stronger pain meds and the investigations began again with a new MRI.

I remember the appointment with my oncologist very well. I agreed on the phone to meet face to face. I was ushered straight in and the conversation started at the business end.

You have some persistent disease. These words slammed into my ears and tore a hole through to my belly. I still had cancer. I knew from previous conversations that radiotherapy is a once-only deal for any single site and I had been given as large a serving as I could possibly receive. A dose that targeted the area where the persistent disease was found.

I was told how the surgeon had taken small margins around most of the tumour and knew he left microscopic disease in some areas. On my temporomandibular joint (TMJ) or jaw joint, he left as little disease as he could without impacting too much on the joint - a very specialised part of the skull that he tried not to adversely affect. Radiotherapy was expected to mop-up any remaining disease in the area but unfortunately it had no effect on this section of remaining tumour attached to my TMJ. The tumour had since grown and was now well into my ear canal and my TMJ including some surrounding tissue.

The conversation continued with numerous mights, maybes and ifs thrown in, all telling me that I had very few options for treatment. Radiotherapy was off the table. Chemotherapy is ineffective for this type of cancer and therefore only used palliatively. Surgery might provide an option if the tumour had not gone too far down the ear canal.

We were sent to Waikato Hospital to speak to the head and neck team about surgical options. I must commend the surgeon we spoke to at this point - he openly admitted that the required surgery, if it could be done, was beyond him and referred us up to Auckland Hospital to attend the Multidisciplinary Meeting.

First impressions of our first appointment matched expectations based on other appointments. Fill out the required forms, a quick weigh-in, and off into a room to wait, all with military efficiency. The next hour or so passed with a fast paced slowness that was tinged with apprehension and fear as we were introduced to a variety of doctors and nurses and shown the room where we would be seen by the MDM team.

The Multidisciplinary Meeting itself was extremely intimidating. We had been told what to expect and had been in the room once before but the reality of the event was overwhelming. We entered the room together but I was ushered into the chair in the front of the room, facing all the other chairs and surrounded by instruments and monitors. The view from the chair was intense - over twenty faces staring at me like a Christmas gift with the wrapping still on. Anticipation at what was to be revealed swirled through the room.

One of the doctors we met in the other room earlier stepped forward and started to address his colleagues with the symptoms I had shared with him. Questions came from various areas of the room, addressed to either myself or the doctor and the answers were met with interest, some heads dropping to write brief notes. In moments the experience passed and with a noticeable sense of relief we returned to our previous room.

Although I found the experience extremely intimidating at the time, I look back on the MDM as a very amazing process. Instead of dragging a patient from specialist to specialist, everyone is together at the one time, in the one place. Multiple patients, multiple specialists, amazing results.

Based on our MDM I was scheduled for a biopsy the following Thursday. One of the surgeons we had just met managed to squeeze me into his list. The results were as expected. The cancer was still there and I was listed for radical surgery the next Tuesday.

The plan was I would head to theatre Tuesday morning. I was going to lose my ear, my ear canal and my TMJ including a section of skull on the left hand side of my head. As part of the surgery, a full thickness skin graft from inside my left forearm would be used to rebuild the defect remaining after the removal of the skin and other tissue around the tumour. My left thigh would provide a partial thickness graft to help repair the donor site on my left forearm. Due to the extent of the surgery I would wake up in Intensive Care after being kept sedated for a time following surgery. To my great surprise I was woken after nine hours of surgery with a large dressing on the side of my face.

We have found evidence of cancer on your facial nerve and believe it to be too great a risk to leave but it is a decision you and your wife need to make.

We were devastated. The surgery was scheduled to continue Friday morning so we had two days to decide if we wanted to take the risk of the cancer found in the facial nerve spreading or loose my facial nerve and any control of the left hand side of my face, permanently.

Realistically the decision was simple; reduce the risk as far as possible by removing the nerve. Unfortunately numerous other concerns come with such a decision. The biggest is appearance. With no facial nerve the muscles in the face relax causing the corner of the mouth to droop, pulling the rest of the facial tissue down with it under the effect of gravity. Lips also stop working on that side, impairing the mouth opening for eating and sealing of the lips for drinking. The eye is also affected because the muscle used to close the eye will no longer work. Ironically the nerve controlling the opening of the eye runs from another place and is not affected so you can open your eye without issue.

Thankfully there are solutions to some of these issues. They are far from perfect but they work. A static facial sling was created from a section of tendon taken from my left ankle and used to support the left hand corner of my mouth. My left eye now closes under gravity because a small gold weight was implanted into my eyelid. During surgery a nerve graft was performed also. A section of nerve was taken from my left foot near the ankle and grafted onto my face. One branch was run to my mouth and a second was run to the corner of my eye. To this point I have had minor movement restored to my mouth and can form part of a small smile. Unfortunately this is the extent of my facial movement from my left hand side.

Sunday morning saw me released from ICU after being roused from sedation early Saturday afternoon. Twelve hours of surgery prior to the sedation had left me with an interesting new normal to face, not to mention the demons I imagine plague all surgical cancer patients; the doubts, the ticking clock, the bucket list. I recall most of my energy being eaten up trying to answer one basic and fundamental question: What if they didn’t get it all?

The world got rather dark at times trying to answer that question. How long did I have? Why me? Numerous different scenarios played out before an interesting thought came to me. What if they did get it all?

The bucket list grew. The surgeons were going for big margins. They were playing to win. It was possible. I was still afraid but I was hopeful.

Room 11 on Ward 74 was for high dependency patients and I fitted right in. For most of the first day I couldn’t see, I had a conjunctivitis infection in both eyes and could only open them for seconds at a time. I soon found myself up and about, dragging three drains and an IV drip from my bed to the TV room. My wife soon started setting goals I had to achieve: visit the TV room twice a day, leave the ward for a walk, stay off ward for an hour and things like that. Little goals that had a huge impact.

By Tuesday I was frustrated with being fed a puree diet and started to ask for at least a soft diet. My workmates had sent a fruit basket and the grapes were the best I ever tasted, I used them to show the nurses I could eat real food but the change process was slow. My wife started to smuggle scrambled eggs in from a nearby cafe for breakfast and sometimes casserole or stew for dinner. Friday of that week I was given a reprieve; I was out on ward leave, bandages and all.

The apartment my wife took me to was close to the hospital and was where she and my mother had stayed while I was in hospital. I remember how nice it was to be in a normal shower. The pleasure of a normal bed where I wasn't woken up by nurses or other patients was huge. Saturday was the highlight of my ward leave. I had Yum Cha for lunch with my wife and my dad.

Monday we returned to Ward 74 for our official discharge. Bandages were removed and wounds cleaned. Scripts were issued and we said good bye. My wife and I will never be able to thank the team on Ward 74 enough for their support, care and tolerance. Our experience of all the staff was amazing with a few going above and beyond.

It was very bittersweet to be told in May 2017 that another stay on Ward 74 was on the cards. Between check ups I had noticed a couple of lumps had appeared on my neck. One very close to my throat and the other in the muscle on the side of my neck. They were only small and not painful but I was still worried enough to mention them to my surgeon at my follow up in Auckland. I just wanted to make sure they were nothing.

I was immediately sent for a fine needle aspiration that did not produce results. A biopsy was than arranged with my local dermatological surgeon and the results came back positive. From here things went crazy: scans, appointments and another Friday morning MDM in Auckland to plan how to deal with it.

The plan to tackle these two little spots was simple but radical. The surgeons would remove all the muscle in that area of my neck and a section of skin above the lumps. The pectoral major muscle from my chest would be rotated over my collar bone to replace it and a full thickness graft from my chest would repair the skin defect. This would produce a natural look for the neck region where the tissue was removed. Side effects were that I would lose a major nerve to my shoulder, weakening my left arm and probably reducing my range of motion.

This surgery was completed on the 7th June 2017, the Wednesday following the MDM. A very fast and decisive arrangement. We were on our way home the following Wednesday after two days ward leave and another amazing stay with the caring team on Ward 74. Time to learn about yet another new normal.


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