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Head and Neck Network's Posts (172)

Network News 8 January 2018

Kia ora whanau,

Happy New Year

We wish you the very best for 2018. I hope all is well with you and your loved ones. The holiday break is over and the Network is ready for the challenges of the year ahead. We have committed to working with the Auckland/Northland District Health Board to implement the recommendations of the 2017 review. We will continue our work with our Facebook group providing online support for those affected by head and neck cancer. We are planning an even better World Head and Neck Cancer Day in 2018. We remain committed to connecting, supporting, and advocating for people affected by head and neck cancer.

Articles of Interest 

Over the holidays there were a few articles of interest you may have missed. 

Dick Quax, former athlete and Auckland Councillor spoke of his head and neck cancer. Read more here.

Val Ireland, one of our Auckland members reached out for help for her unmet needs. Read more here. This article touched the hearts of many of our members, and I have responded in an Open Letter to Val. You can read it here

Cetuximab (Erbitux) will be available from 1 February 2018 as an additional treatment option for people with locally advanced, non-metastatic head and neck cancer who are unable to use the current standard chemotherapy treatment, cisplatin. Read more here.

Network News

Our Network continues to grow. We are New Zealand focused, and welcome new folk from around the world. We are all connected by our head and neck cancer experiences. We are delighted to have 717 Twitter followers, 275 people in our Facebook group, 138 website members, and 471 LinkedIn contacts. If you want to connect with us through any of these channels you can do so here. Our website, http://headandneck.org.nz/Facebook Group, Twitter, https://twitter.com/HeadNeckNZ, LinkedIn, https://www.linkedin.com/in/headnecknz/

New Members

We welcome to our Network these new members. 

Some of the new folk, will be in your area.  As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. Don't forget our Groups. We have something for everyone, and you can add a comment in the Forum to make contact with the members of your group.

Popular Posts

Guest Editorial - Living with Disfigurement

There's no art to find the mind's construction in the face. - William Shakespeare

These plastic surgery quotes were retrieved from New Zealand clinician sites on 4 December 2017.

“...it’s your face which people notice first. Your face projects an image to people about who you are.”

“Plastic Surgery: Empowering You With The Confidence To Succeed In Both Your Career & Social…

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$1 Voicebox: Weds Weekly

One more Weds Weekly before the Christmas break from one of our contributors 

Learning to speak after losing a voice box is a challenge for a good number of cancer survivors, but it’s a challenge many times worse in a country like India where the cost of prosthetic voice boxes is…

Read more…

Can we make ACC fairer? Summer Wednesday.

Weds Weekly is in summer hiatus so I will endeavour to post one important health story each week until normal service resumes. 

Ever wondered about the discrepancy between disabling illnesses and disabling accidents? Have a listen to this interview with someone who is taking a good look at this issue. 

ACC barrister and researcher Warren Forster has been named the NZ Law Foundation International Research fellow for 2017. He will spend…

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Ka kite ano,

Diana Ayling

Chair Head and Neck Cancer Survivors' Support Network

Read more…

We’re trying to act on the lessons we learnt from the e-Patient Dave workshop and lecture. I'm looking at my last major encounter with the health system through the lens of his philosophy.

Remember the Dave deBronkart slogan from a few weeks ago? Patients do better if they are e-Patients, equipped enabled, engaged, empowered. His plea was for doctors to “let patients help” and his model was one of participatory medicine.

I want to look back on the Multi-disciplinary meeting I attended in January 2014 as an example of how unempowered I was and how little the system “let patients help”. My point is that it would have been much better for me and everyone else if I have been more empowered and engaged.

I know my surgeon was worried about me and that the team really did care (sometimes had a funny way of showing it) but all the way through I was treated as a passive patient, not an active partner. Knowing what I know now, what would I have done differently? What would I have expected from the health care workers?

Neither my son nor I knew how to deal with the MDM in a proactive way. I’d been through it before and thought my main job was to be brave (one of my vanities) and do all that was asked of me. Peter is usually the assertive type who demands answers but was strangely quiet during the process.

I was calm. Just glad to have an appointment after a nightmare five weeks from biopsy to this meeting. With all the stress and uncertainty I had caught the norovirus in late December and hadn’t been able to shake it off for an extended period. I’d been infectious and alone over the holidays, wallowing in a swamp of self pity. My husband had just been placed in a dementia unit and now my cancer was back. I was so depressed I couldn’t even ask for help. (The news that it was a recurrence arrived on Xmas Eve when I was sick and weak but of course I already “knew”.)

A delayed biopsy result (had to go to two labs?) and then Christmas. After the statutory holidays were over I nervously made contact with the hospital and asked for my biopsy results to be emailed. They indicated carcinoma in situ. Didn’t sound too bad, did it? The family were rallying around with one son even coming from the UK to help out. I felt I could cope now.

(And I love it when the statutory holidays are over. I always seem to choose that time to get sick when hospitals have a only a skeleton staff.)

I got my spirits back a bit and did several long walks with friends who were home after Christmas. I had lost a surprising amount of weight - even before the norovirus - but was fit and strong by now. This is what makes having a cancer diagnosis so confusing.

I’d had a CT scan at NSH, assuming it was just a formality. I hadn’t had lymph node involvement before and this cancer was very small. No one informed me of the results, results that turned out to be problematic. 

How had I ended up in this place with my third recurrence of HNC?

When I had my biopsy on 13 December, my surgeon was obviously concerned, gave me his card and told me I could ring his private clinic. I did a few times but the biopsy results were delayed and I was far too shy to ring the surgeon himself to ask what was going on.

I eventually handed this job over to my more confident son who didn’t know much about HNC and took the surgeon's words for it when the result came in on Xmas Eve. He was assured that it wouldn't be as bad as last time - but similar big surgery and then I would get back to what I was. (This turned out to be untrue.)

That was the message that filtered back to me but it was infuriatingly short on detail and there was no way I was going to ring the doctor now at Xmas. I knew a lot about head and neck cancer and yet I had handed my power over to my son. I don’t think that is a good idea unless you are too sick to deal with it or you have a caregiver who is well informed about cancer. What do people think?

On the other hand, I didn’t have the wherewithal to handle my own case as well as dealing with the fact that I had another cancer. How do we get around this vulnerability if we are going to be e-patients?

I fretted for five weeks. I belonged to a culture where you don't ring doctors. For my generation doctors were kings, especially consultants.  You must never make a nuisance of yourself. 

I probably would have rung a cancer care coordinator. 

Thus ends Stage 1 of my MDM story. For my confusion and distress I scold myself now. However, it’s hard to be an e-patient when you are deeply upset. I’m writing this in the assumption that other people feel like me and we can grow into more engaged patients together with the help of an improvement in the medical system.

How could the hospital have done more? 

  • Given me the name of someone to speak to who would be there over the Xmas period.
  • Had a back up system for the surgeon who showed empathy and concern. Empathy is not much use unless it can be acted on. A nurse who could have kept in touch?
  • Emailed me the biopsy results and a brief explanation.
  • Definitely should have emailed me the scan results or rung me about them. Probably the latter.
  • I needed a time frame once the results came in. Hard to do on Christmas Eve but that is the VERY time when you need it most. I had no idea about the FCT or that MDMs were always on Fridays. The uncertainty is a killer.

And hey, e-Patient also means electronic patient. Email has been around for decades. Why can’t hospitals use it more?

Stage II is next week when I describe the MDM. That is where I have more ideas as to how the hospital could have been more patient centred.


HNC = head and neck cancer

MDM = multi-disciplinary meeting

NSH = North Shore Hospital

FCT = the mandatory Faster Cancer Treatment programme which means you have to be treated within 62 days after diagnosis.

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Coping, warning signs and HPV

It’s an unfortunate truth that the cancer battle doesn’t end after treatment - even successful treatment. The effects , physical and mental, will linger and dealing them is not always easy. Lead article this week gives a few possibly useful, tips on coping.

# Marriage is betting someone half your stuff that you’ll love each other forever.
# In 2016 our favorite celebrities died. In 2017 they lived long enough to become the villain.
# An apple a day will keep anyone away, provided it is thrown hard enough.


Being Comfortable In Your Skin After Cancer

(U.S.) Cancer survivor shares ideas about how to live again in your own skin during and after cancer diagnosis.

My goal during cancer was to be comfortable living in my own skin. A cancer diagnosis is a life-changing and frightening diagnosis—the idea of something growing in my body that could kill me, something that could come back at any time is scary. How am I truly supposed to be able to live in my own skin? with my dark side.

Attitude. How does a glass-is-half-empty girl, even before cancer, become a glass-is-half-full girl instead? I refuse to paste on a fake smile or a plastic attitude. I continually train myself to look for and acknowledge the positive things—there are always a few around me. I also try to limit the negatives,

Humor. Humor can be everything from irony to stand-up comedy, funny well-written sit-coms, good quotes and jokes – whatever makes you smile and laugh. e opportunities to lighten up and to laugh. It is good for us!

Acknowledgement. I acknowledge and work through the dark feelings when they happen. Fear is not always a bad thing—sometimes it motivates us to see a doctor or ask for a test or do a little reading from a reputable medical source.

Companionship. Do not go cancer alone, even if you are a loner. I have said that before and I will keep saying it. Reach out to fellow cancer patients and survivors, support groups—in person and online – friends, family and medical folks.

Time. Though it sounds trite to hear it during active treatment or right after active treatment, time does heal. Work on persistence and patience. Be gentle with yourself and give yourself the gift of time.

Comments and actions of those around us. Remember that the way people treat us says more about them and their experiences than it does about us. Take others’ actions and words less personally. Do not give others the power to hurt, anger or neglect you.

Full story:

Cancer is an insidious killer.

(U.S.) Often it manifests itself very suddenly, and to a certain point people do not even realize that something is wrong. However, survival often depends on how early the diagnosis was made – and this means that you need to know the signs of the presence of the tumor.

“The bottom line is that the sooner cancer is detected, the higher the likelihood of a successful outcome, says Carolyn Aldige, founder and President of the nonprofit organization Prevent Cancer Foundation. – If the cancer to stop in the organ where it started, it will be much more receptive to the treatment with surgery, chemotherapy, radiation and/or immunotherapy”.

Here are some possible early signs of cancer that you need to be aware of:

Persistent cough or hoarseness: These are common symptoms of respiratory infections, but if they do not go away after three or four weeks, check with your doctor. ese can be signs of cancer of the lung, larynx, esophagus, or thyroid.

Unexplained weight loss: You can think, how wonderful that you finally dropped a few pounds without even trying, but doctors warn that in healthy people it does not happen.

Difficulty swallowing: Cancer of the head and neck can affect the mucous membranes, depriving them of lubrication needed for swallowing.

Itching: itching of the skin can be many reasons, but unexplained itching may indicate some kind of blood cancer or lymphoma.

Persistent ear pain: This may indicate oral cancer, because the feeling in the back of the tongue and the ear provides the same nerve. Other signs of mouth cancer – sores in the mouth that won’t quit, and seal the neck.

Chronic heartburn: Indigestion happens often, but when heartburn does not pass, it can be a symptom of esophageal cancer.

Full story:

Oral HPV Infects 1 in 9 men in America

(U.S.) New research estimates that eleven million men in the United States have oral human papillomavirus (HPV), a disease that can be stopped by vaccination. Men are more likely than women to have HPV-16, an oncogenic type of the disease that contributes to cancer,

"Like HPV infection occurring at other anatomic sites, oral HPV may clear by itself; however, if it persists, certain strains such as type-16 may lead to oropharyngeal cancer," Ashish A. Deshmukh, PhD, MPH, Assistant Professor in the College of Public Health and Health Professions at the University of Florida, told Drug Topics.

Deshmukh and his colleagues studied the prevalence of oral HPV in both men and women age 18 to 69 years old by using data from the National Health and Nutrition Examination Survey from 2011 to 2014.

Deshmukh believes the study highlights the need to vaccinate for HPV. While half of adolescent girls aged 13 to 17 were up to date on their HPV vaccinations in 2016, just 38% of teen boys were up to date on their vaccinations, according to a new fact sheet released by the Henry J. Kaiser Family Foundation.Even those who already have HPV can benefit from the vaccine because it may protect against contracting a different strain of the disease.

Full story:

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Spring challenge: Friendly Friday

Spring is almost over but it's still here all around us with blossom, buds, new leaves, flowers and tiny fruit. Mild days, longer nights and sometimes, even in Auckland, episodes of sunshine. 

How do you want to share the love of spring with us? Post a photo on our Facebook group: https://www.facebook.com/groups/1116515895074395/ or find a poem ... or even write one. It doesn't have to rhyme - can just be a list. (That's still a poem if you shape it a bit.) 

If you are in the Northern Hemisphere - poor you, winter is coming - you will need to look through your files or find your favourite spring pic online. (Or write that poem.) 

Here's a pic from Olwen of an early fig and fresh green leaves. 

Read more…

This is a story about the Digital Health Workshop held at North Shore Hospital on 30 October. Six of us attended as well as a number of health care workers. Dave deBronkart who is famous in health circles as a strong advocate for a new health care paradigm, is speaking at a number of events in Auckland and elsewhere. 

The photo is of Dave, Diana, myself and a Waitemata DHB doctor.

The internet has changed everything. 

Remember when it was first available in New Zealand? 1996? Little did we know then how our lives would change. 

The internet has enabled us to connect with medical people and each other. The former is slow to develop in New Zealand but the latter has been going on since the internet began. 

Dave deBronkart was already clued up about technology in 2006 (he used the internet before most of us could) when he was diagnosed with metastatic kidney cancer. It had spread to his lungs with metastases also appearing on his head, his tongue, his arm and his thigh. 

Dave wasn't going to take this lying down. He was determined to walk his daughter down the aisle. With the support of a progressive GP, he joined a patient group on the internet where he learnt about a new treatment that worked for some: Interleukin. They also gave him a list of hospitals where the treatment was carried out. To cut a long story short, he was cured.

So slow is the normal run of events that Dave's treatment is still not in the medical literature ten years later. The internet and a strong patient group enabled him to bypass the normally slow progress of revolutionary treatments. 

(I liken his happy ending to the way that immunotherapy like Keytruda, for a small number of people at least, can bring about a good remission when nothing else works for metastatic head and neck cancer.) 

Fortunately for us, Dave's survival enabled him to become a patient advocate. In the ten years since his treatment, he has rebranded himself as ePatient Dave and made educating others his life's work. The "e" is for electronic, yes, but also for Engaged, Enabled, Empowered and Equipped. We can all be ePatients! He thinks this is a good thing for both patients and health care workers. 

An ePatient doesn't say, "There's nothing I can do." She says, "What can I do?" I interpret this to mean that we can make the system work better by working with our doctors, not passively accepting whatever is given us. There won't always be a cure but we can negotiate with health care workers for excellent palliative care, for example. 

On the cover of Dave's book "Let Patients Help" is a picture of him, a computer screen and his GP. They are working together with both of them having access to the notes on the screen. This is the "triangle" that works, he says.

The old model of care is is called "paternalism" because the patient is treated like a helpless child. That disempowers the patient.

Do all patients want to knock the barriers down between them and the information that doctors have about them? There's a movement called "Open Notes" where a study was carried out to see if patients could handle full access to all their health information. According to Dave, only 1% of patients were freaked out. The other 99% wanted to carry on with open notes. 


He said that Wikipedia is an example of how patients can help. You can learn to edit entries and a patient might be able to add a side effect or other patient-reported information not known to the writer.

Dave was wearing pink socks at the workshop as was Dr David Grayson whose department organised the visit. The socks (the moustaches have no meaning) are an emblem of a social movement to change medicine from the ground up. (I have four pairs to give away if anyone wants to join the revolution ...) The movement is towards participatory medicine, the name given to the society Dave runs. 


Finally, an interesting nugget. In digital matters skills usually filter down from a younger to an older audience. I like the topsy turvy nature of that. It's not like most situations where we older people think we can teach the younger folk a thing or two.

In Dave deBronkart's case though, he tips this concept on its head too. A proud grandfather, he has the latest technology at his fingertips. He'll be there when the "chatbots" take over!

O brave new world,
That has such people in't! (The Tempest, 5.1.182-184)


Read more…

Weds Weekly is a round-up of HNC stories from the web, contributed by a member. This week there is a story dear to my heart. Should we use mouthwashes with alcohol in them? (Ed.)

If you’re reading this chances are you’ve either been diagnosed with a cancer or know somebody who has. Talking prevention then could be considered untimely, however a little emphasis on the need for regular checkups certainly won’t go amiss - and for seconds there is a caution about overuse of mouthwash.


# Is it still a democracy if the people decided that they don't want a democracy?

# When a cat hears birds chirping it’s being bombarded with fast food commercials

# If a fly loses its wings is it a walk?


Better safe than sorry with cancer screening

(India) Cancer, an aggregate of closely related diseases, begins when cells in any part of the body start multiplying in an uncontrolled manner and overcrowd normal cells. This proliferation transcends all bodily barriers and spreads to organs distant from the site of origin. Such is the gravity of this fatal disease and if remained unchecked, can lead to death.

The word cancer was introduced by the Greek physician Hippocrates who used the term carcinos and carcinoma to describe non-ulcerating and ulcerating tumours. Cancer literally means a crab owing to the finger-like projections, more formally known as spiculations, seen mostly in the radiographic and microscopic analysis of breast tumours.

Evidence from ancient manuscript and fossilised bones of human mummies in Egypt suggests an ardent relationship between cancer and humans. Tissue growths indicative of osteosarcoma (bone cancer) and skull destruction as seen in cancer of the head and neck have been found.

According to the World Health Organisation (WHO), cancer is globally the second leading cause of deaths and nearly every one in six deaths is due to cancer. However, one of the most viable options for controlling these figures is by introducing the judicious use of cancer screening in the worldwide medical lexicon.

Often, we find ourselves pre-empting unwanted situations from happening in our routine lives, like locking doors every night to avoid any unforeseen event. Unfortunately, this concept of cautiousness falls short of achieving its due pragmatic importance when applied to disease prevention.

“Prevention indubitably is better than cure, in reality, it is the best cure. However, if prevention is not possible then early detection of disease and seeking early medical advice is of prime importance. This becomes even more important for a disease like cancer, which can grow to metastasize and become incurable within days to weeks. Owing to this fact, many screening programmes are run worldwide for different types of cancers,” says Dr Muhammad Sohaib Nadeem, Consultant Oncologist at Combined Military Hospital (CMH) Rawalpindi.

Full story:

Mouth rinse mania: How hygienists can reconcile concerns over alcohol rinses

(AUSTRALIA) As a health-care professional, it can be hard to distinguish between what is right and what is wrong. What do we recommend and why? A balancing act at best.

Often, we have to ask ourselves: Is there clinical evidence that can help us overcome our feelings about a treatment or intervention? What is the standard of care, and what do ADA Guidelines dictate? What are my patient’s constraints, physically, mentally, and socioeconomically?

It goes back to individualized care. For a long time, I stood behind the daily recommendation of mouth rinse use, namely the ever-famous Listerine. A discussion with a patient who had claimed that Australia banned alcohol-containing mouth rinses due to oral cancer, though, sent me down a whirlpool of confliction.

While I found no evidence or news regarding an outright ban by our ally, there was a 2008 study in the Australian Dental Journal that found a “sufficient correlation” between the use of alcohol rinses and the development of oral cancer.(1)

The study cited epidemiological evidence between alcohol use and oral cancer. It postulated the mechanism of action from in-vitro animal studies, stating that alcohol hampers the mucosal barrier by affecting the lipid layer and thus causing permeability.

The byproduct of alcohol metabolism, acetaldehyde is a known mutagen and thus, long-term use resulted in mucosal atrophy and hyper-regeneration.

Full story:

Role of Immunotherapy Expanding in Head and Neck Cancer

(U.S.) Immunotherapy and novel multikinase inhibitors continue to play an important role for patients with head and neck cancer, particularly as ongoing clinical trials are further exploring these agents.

The field already has 2 immunotherapy approvals with PD-1 agents. Pembrolizumab (Keytruda) was granted an accelerated approval by the FDA in August 2016 for the treatment of patients with recurrent or metastatic head and neck squamous cell carcinoma following progression on a platinum-based chemotherapy. Then in November 2016, the FDA approved nivolumab (Opdivo), another PD-1 inhibitor, for patients with metastatic or recurrent disease for a similar indication.

“We’ve come to learn that immunotherapy is effective in patients with head and neck cancer,” said Ezra Cohen, MD.

In an interview during the 2017 OncLive® State of the Science SummitTM on Head and Neck Squamous Cell Carcinoma and Thyroid Cancer, Cohen, professor of medicine, Division of Hematology/Oncology, associate director for Translational Science, Moores Cancer Center, University of California (UC), San Diego, discussed the role of immunotherapy, the potential of entrectinib, and the importance of multidisciplinary teams for the treatment of patients with head and neck cancer.

Full story:

Read more…

Cancer research, trials, treatments and discoveries are going on around the world and encouraging progress is being made in many areas. Lead story this week is about the contribution of a near neighbour. (Prof Frazer is pictured above.)

That’s followed by a less encouraging discussion about cancer diagnosis – pessimistic, yes, but a realistic viewpoint none the less.


# "If you are a pessimist, you are never going to be disappointed” is a very optimistic attitude to being a pessimist.
# Seeds are the original .zip files.
# There is probably an entire factory dedicated to making 'made in china' stickers.


Qld researchers have high hopes for head-and-neck cancer treatment

(Australia) Former Australian of the Year Ian Frazer is close to starting clinical human trials on a new vaccine that could be used to treat head and neck cancers.

Admedus Immunotherapies is working with Brisbane’s Princess Alexandra Hospital on the breakthrough, which is based on the use of Professor Frazer’s human papillomavirus (HPV) vaccine.

Prof Frazer said HPV-associated cancers made up 20 per cent of all people diagnosed worldwide.

|“Unfortunately, conventional treatments are not always successful,” he said in a statement.

“Harnessing the immune system is a new way to treat these virus-associated cancers.”

Admedus Immunotherapies chief executive Neil Finlayson said the new HPV vaccine had already successfully treated tumours in mice.

“Head and neck cancer is rising in incidence, and while chemo-radiation therapy has a good prognosis, in about 20 per cent of cases the cancer will metastasise,” he said in a statement.

“While there are only 25,000 cases of HPV-associated head and neck cancers globally each year, demonstrated clinical proof of concept of the vaccine’s effectiveness in treatment would mean the HPV vaccine could potentially be used to treat all HPV-associated cancers.”

The next step is to conduct a human clinical trial in Queensland, which is due to be completed by early 2019.

Admedus Immunotherapies received a $250,000 grant from the Queensland government to carry out the trial.

Queensland Innovation Minister Leeanne Enoch said the project had the potential to become “a billion-dollar market within three years of being approved”.

“This project, in which Advance Queensland is backing one of Queensland’s leading medical researchers, has enormous potential – from saving lives around the world to reinforcing Queensland’s reputation as a place to conduct and invest in research and clinical development,” she said in a statement.

Full story

Cancer will not 'defeat' John McCain — or anyone else

(U.S.) Cancer will not defeat John McCain. And John McCain will not beat cancer. Cancer is neither an opponent nor a binary condition. A medical team finds it, cuts it out, poisons it, irradiates it and prays for the best.

If they are successful, if your stars are aligned, your cancer will go into hiding and lurk just outside the gates of good fortune for a long time.

Senator McCain is a war veteran, POW survivor and presidential candidate. His courage has never been in question. But cancer cares nothing about heroism, and only five out of 100 people outlive glioblastoma; according to the best studies available, their survival was not due to willpower or fighting spirit.

Teddy Kennedy and Beau Biden lacked for neither, and both were felled by the disease. If “battling cancer” has long been a misguided metaphor, it seems spectacularly inapposite in connection with the redoubtable John McCain.

The idea of winning or losing is just cruel. And it has been since Susan Sontag made the point 40 years ago in her classic “Illness As Metaphor.” Then, as now, support and encouragement can be salutary during hard times and health challenges, but they are not magical. Cancer is not an adversary to be conquered or outsmarted; cancer is, in author Siddhartha Mukherjee’s phrase, the emperor of all maladies.

The sooner we stop pitting humans against a disease, cease using war metaphors, the better off we all shall be, especially cancer patients and their loved ones. Many a mislabeled loser has been quietly valiant and heroic beyond belief.

When first diagnosed, unspoken shame strikes all patients: you must have smoked or drunk too much, eaten unwisely, exercised insufficiently, loved incompletely, or mangled your emotions into a sorry state.

And then, should you succumb to cancer, the unuttered implication is you did not fight doggedly enough, or you chose the wrong hospital or wrong protocol or, God forbid, the wrong God. It is all unnecessary and untrue. You do not declare war on nature; cancer has been with us since ancient Greece, when Hippocrates, the father of medicine, removed tumors around 440 BC. Just like my doctors did for me in 2015.

Tonsillar squamous cell carcinoma is not as lethal as glioblastoma, but it’s a serious disease.

Cancer of the head and neck is the sixth most common malignancy in the world.

Possessing neither the energy nor inclination to charge into battle, I surrendered after getting over the shock of the diagnosis. I surrendered to the new realities: the constant companionship of mortality and the hard work ahead.

After CAT and PET scans, I took drugs, took notes, had teeth removed, then a tonsil (by a robot) and dozens of lymph nodes. No food or water for eight days. Thirty-five radiation sessions scrambled my taste buds like eggs, burned my throat like toast, and fried my saliva glands. Talking was difficult, breathing was compromised and any social life was fantasy.

Since cancer thrives on alcohol and sugars, I swore them off. Lost 45 pounds. Hardest of all, perhaps, was trusting total strangers who introduced themselves as my doctors and nurses and technicians and dietitians and therapists — far from a battalion of warriors, they made up a gentle, life-saving team. They addressed my cancer. I dealt with my psyche. And my family. I can only hope I did as well as they.

Battle cancer? At 67 years of age? At 80? At 8? Other than “following orders,” military language never came into play. If a metaphor were needed, weather provided a more useful lexicon. Weather can surprise, strike hard and then dissipate.

Cancer was akin to a great Nor’easter; once spotted on the radar screen, you batten down the hatches, consult the experts, follow the playbook, gather supplies and community and hope for the best.

You don’t fight weather. You don’t blame its victims, and you don’t put the onus on the stricken.

With cancer, the only real war is the war of words. And even a wordsmith like Barack Obama, ever empathic, could use some re-education.

“Give it hell, John,” is what Mr. Obama tweeted to Senator McCain.

Full story:

Read more…

Auckland is not the only centre holding head and neck cancer support meetings. As far as we know there are regular meetings in Nelson and Christchurch. We are not sure about Wellington. Does anyone know?

Here, committee member Cosette Calder reports on the most recent Christchurch meeting. 

On Thursday 19th of October Christchurch held its 6 weekly meeting. This meeting was about  “patient stories” where patients tell their story to the group.

Our first speaker was diagnosed with base of tongue cancer five years ago and our second speaker spoke of throat cancer diagnosis two years ago. These stories brought up many issues faced by our head and neck community. Particularly swallowing issues, lose of taste and hearing impairment.

The stories led to a group discussion on these topics with others sharing their similar experiences.

Although we did share experiences of trauma there were some lighthearted comments and laughs as well which made for an informative, relaxed social evening. A place for our patients and caregivers to feel supported, and that they are not on this journey alone.

If you would like to join our Christchurch group, please contact Pene Clifford from the Cancer Society 03 3795835 and view the Canterbury West Coast Cancer Society website where you can find a list of support groups and times. 


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Kathryn is one of our regular contributors. Her husband Greg was treated for adenoid cystic carcinoma not long after the loss of their daughter to cancer. I asked her if she had wisdom to share on how to deal with the suffering that cancer causes us. Here are her words.

The top illustration is of their happy place, their farm just out of Whangarei, rolling country dotted with native bush. There's one of the Parnell Rose Gardens, one of Greg fixing his car with his youngest son and of the Auckland Domain. 

Once the jagged edges of shock and devastation settle a little, we all develop our own ways of coping with a cancer diagnosis and the harrowing journey that follows.  Navigating our way through the long and tumultuous road of cancer affects us all differently.  It is our own personal experience and as such we learn coping strategies that are unique to us.

I asked Greg to think about what helped him to cope during the time of his diagnosis, as well as the period of surgery and radiation therapy that followed.  He struggled to recall much of that miserable time 12 months ago.  It seems that often our greatest stresses in life get relegated to deep distant parts of our memory bank where gradually, over time they diminish a little bit though of course never completely.  He did recall however, that during his dark post op days, it was the little things that meant the most.  It sounds like an old cliché, but in this instance, for him, that’s really how it was.  Small and sometimes inconsequential things that previously he may have taken for granted or overlooked the significance of.  He remembers feeling a sense of relief at hearing my footsteps along the hospital corridor floor every morning and knowing that meant that he didn’t have to cope with the long, arduous day ahead alone.  Other things too, visits from his kids, a new hospital room complete with a view.  Being able to leave his hospital bed and have a walk around the ward.  And, during the long nights when sleep eluded him, the realisation of just how precious his life had suddenly become.

During RT, he was grateful that for almost all of his treatment duration he felt able to get out and about and do things, as well as go for the odd jaunt around Auckland.  We both appreciated that during this time he felt well enough to leave Domain Lodge and escape almost certain cabin fever by venturing outdoors every day to have a stroll through the Domain, and one day even an afternoon exploring the Parnell rose gardens and the pretty bays beyond.

 It was appreciation to Maggie from the Whangarei Cancer society who organised us a room change at the lodge so we could sleep alongside each other again; it was appreciation of his medical team and all of those involved in his care.  It was the deep contentment of being home on Friday.   It was the relief when yet another week was ticked off and the finish line loomed nearer.

Though many days were far from smooth sailing, these things collectively contributed to tiny steps forward and helped us to cope with the day to day reality of being a cancer patient (and his wife) in another city and away from all that was familiar to us.

My brief was ten things that have helped us to cope.  I’ve thought about this and talked to others I know that have been affected by cancer but I’ve only come up with 9!   Maybe we can add to this list as a group …

  1. Having the love and support of family.  For Greg and I, this has to be on top of the list.  And indeed it came through often with everyone I spoke to.   When we experience extreme stress, discomfort or anxiety, all we really want is the familiarity and comfort of our nearest and dearest.   We want family and loved ones close by to be our voice and our advocate.  We want reassurance and guidance from them.  Often we also require emotional support, like quiet company at the bedside; or during procedures and appointments.  Sometimes it can be a seemingly insignificant act of reaching out that can make a difference to a patient; like a hug or a hand squeeze when the time is right.
  2. Practical assistance from the wider family network, friends, work colleagues, neighbours.   The call or visit that offers useful support, by way of taking care of tasks that need attention.  Errands that need to be done; animals that need to be fed.  The mail box that needs clearing. A home cooked meal delivered when you weren’t expecting it; a ride to an appointment or procedure so you don’t need to stress about the traffic or parking; your prescriptions being collected from the pharmacy, or a book from the library.  Errands and incidentals.  Little things mean a lot.  
  3. Agencies such as the Cancer Society and in our case the Head and Neck Support Network are only a call or a message away.  How humbling it is to know that people genuinely care about you and your experiences.   It can be a comfort to share your story with others that have had the same or similar experiences, and from that a sense of camaraderie and companionship can follow.
  4. Being able to escape.  It can be exhausting, overwhelming and depressing aboard the cancer train.  Whilst Greg was undergoing treatment at Auckland Hospital we sought refuge at the Domain as often as we could.  Sometimes we braved the traffic and ventured over the bridge to visit family and our dogs that were being cared for on the shore.   Once we even caught the train to an unknown destination.  A journey or even a gentle stroll around the block was the best medicine for body and mind.   As well as that, it was helpful to have some time together to reconnect as a couple; cancer can place enormous stress on relationships. For some it is having a quiet and peaceful place to retreat to.  A sanctuary when it all feels just too overwhelming.   Everyone I spoke to told me that they had a special place of refuge.  It was the beach, their garden, their own room or perhaps their own bed.  It’s different for all of us.
  5. The internet.  Knowledge.  While sometimes Dr Google can cause more harm than good, nevertheless, having access to the internet during and after cancer treatment was incredibly helpful.  At the touch of a button it links us to others globally who are experiencing or have experienced the same or similar.  For some people there is a huge need to information gather, especially in the early days.  Having access to the internet for info and for linking up with others is a big coping factor for some patients and their supporters.
  6. Having a plan.  Unfortunately, we don’t all get this one, or sometimes perhaps we don’t feel in control of our plan, but for those of us that do, it can be motivating and empowering.  Having some direction or a pathway forward and knowing that you, your carers and your health providers are all on the same page is a sound way to hold one’s own.
  7. Faith.  We all have our own unique values and beliefs. For some of us, having a faith in a greater being or of an everlasting life is a comfort during times of uncertainty. It can sustain us and give us hope.
  8. Time.   Thanks to Andrew for this one.  He described feeling utterly wretched and miserable whilst undergoing treatment.  It was difficult and almost impossible to look beyond the situation he was in.  The days all merged together in an overwhelming blur.   It was hard to imagine a time beyond where he was currently at.  But over the following months and years, slowly he improved, became fit and well again and life has resumed almost as it was prior to his cancer diagnosis.   So, endeavour to remember that things won’t always be as bad as they are today.  Ride out the storm and hope that time will make things better.
  9. Alternative or complimentary treatments and therapies.  Acupuncture, massage, reiki, herbal products and supplements.  Whilst some patients prefer hospital only treatment, some feel that alternative regimes can work together with or alongside their conventional treatment. Not for everyone, but we all have the right to choose. 

Coping is something that we learn and perhaps get better at with practice.  I have lost count of the times over the last five years that this comment, which there is no response for, has been said: “I don’t know how you cope with what’s happened”.   It’s not until we stand on the other side of the fence that we truly understand how soul destroying that statement is.  Life doesn’t always offer us a choice, and some days we simply can’t cope or don’t cope.   But mostly we try to, because we have to.  We find ways and means that work for us.  We get up in the morning and face another new day and, in the words of the infamous Dory from Nemo, we hold our head a little bit higher and we just keep swimming.




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Knowledge is power – know your enemy – is generally good advice but it can also become overwhelming when trying to `know’ a subject as diverse, complicated and downright evasive as cancer. Being a qualified doctor or researcher with years of study behind you can help, but for those less academically inclined today’s lead is a layman’s look at immunotherapy.

Followed by a piece emphasising again that there’s profit in every misfortune.

# Without a good education it would be hard to understand the value of a good education.
# We should collectively spread the superstition that the bones of poachers cure impotency.
# If an octopus loses a tentacle does it become a septopus?


Immunotherapy designed to release the brakes
(U.S.)The human immune system is both clever and powerful. But it is often foiled by cancer’s wily ways.

A new approach to cancer treatment — immunotherapy — aims to unmask the disease for the deadly threat it is, then direct the full force of the immune system on malignancies that would otherwise grow and spread unchecked.

Our multilayered immune defenses spot most foreign invaders and crush them decisively. But cancer, arising out of one or more mutations in our DNA, is a home-grown threat with a deceptively reassuring look. Even as cells multiply and spread, malignant cells cloak themselves in innocent garb.

Confused, the immune system pulls back its talons. And cancer has its way with us.

Immunotherapy can change this.

It stems from a growing understanding of how cancers start, grow and protect themselves from both medicines and our bodies’ natural defenses. It also capitalizes on researchers’ efforts to unpack the exquisite complexity of the immune system, including when and why it retreats from a fight.

The first generation of immunotherapy drugs is designed to release the “brakes” that inhibit the immune system from attacking cancers. By various means, they block an antibody that spares cancer cells from a sentence of “programmed death” issued by the immune system.

These so-called PD-1 blockers are the first of a class of immune checkpoint inhibitors. They are used to treat a wide range of advanced malignancies, including melanomas and cancers of the lung, breast, colon, bladder, thyroid and endometrium.

The first checkpoint inhibitor, a medication called Yervoy (ipilimumab), was approved for U.S. patients in 2011. The drug improved survival time for patients with metastatic melanoma from an average of six months to 10 months. Next came Opdivo (nivolumab) in 2014, which extended survival for patients with certain head and neck cancers, small-cell lung cancers, Hodgkin lymphoma, and some advanced colorectal cancers.
Half a dozen more immunotherapy drugs followed, including Keytruda (pembrolizumab) for lymphoma, metastatic head and neck cancers, non-small cell lung cancers and advanced melanoma.

These drugs tend to help more patients than standard therapy does, and with less punishing side effects. They extend average survival in large groups of patients — sometimes just by months, but generally by spans that are considered meaningful.

And for a small subset of patients whose prognosis is bleak, these drugs can drive cancer into outright remission. This is what instills the greatest hope in cancer doctors.

Full story:

Cashing in on cancer-diagnostics

(U.S.) Agilent Technologies ( A ) is an original equipment manufacturer (OEM) of a broad portfolio of test and measurement products serving multiple end markets. The company's portfolio and increased focus on segments with higher growth potential is a big positive. The company also enjoys a robust presence in the health care market.

A few recent developments bode well for the company's growth.

One such development is the FDA's approval for a cancer diagnostic, PD-L1 IHC 28-8 pharmDx. The test will be used in cases of urothelial carcinoma ("UC") and squamous cell carcinoma of the head and neck ("SCCHN").

The PDL1 IHC 28-8 pharmDx test has already been approved for melanoma as well as non-squamous, non-small-cell lung cancer ("NSCLC"). It has now been approved for UC and SCCHN patients too. The test enables physicians in the United States to identify UC and SCCHN patients, who still have disease progression on or after platinum-based chemotherapy and are most likely to benefit from treatment with Opdivo.

We are encouraged by the company's efforts to develop new assays for cancer treatment.The new assay will help Agilent to cash in on the fast-growing health care cancer-diagnostics segment..

Full story:

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Between relative newcomers like immunotherapy and robotic surgery along with the more traditional radiation, chemotherapy etc, it could be tempting to think cancer is on the run. It’s true the battle has heated up, but it will go on for a while yet and collateral damage is often extensive. However, as the stories below indicate, progress is being made.


# Imagine how out of hand things would get if we didn't get hungover.
# If rats ever gain planet-of-the-apes style intelligence, they are going to inherit some amazing medical knowledge for their society.
# Are cats sometimes allergic to themselves?


Novel approach Reduces Treatment Toxicities in Patients With HPV-Related Oropharyngeal Cancer

(U.S.) The incidence of mouth and throat cancer is on the rise due to transmission of the human papilloma virus (HPV), but physicians at Memorial Sloan Kettering (MSK) Cancer Center (original building pictured above) have managed to significantly reduce the intensity of treatment and improve quality of life for these patients.

The most common treatment modalities for oropharyngeal cancer (OPC) include concurrent chemoradiation therapy, robotic surgery with postoperative radiation or chemoradiation, and induction chemotherapy followed by chemoradiation therapy — a combination known as trimodality (using three modes of treatment) therapy. Trimodality therapy can leave patients with debilitating side effects, including long-term issues with speech and swallowing.

At MSK, fewer than 8% of oropharyngeal cancers are treated with trimodality therapy compared with the North American average of 41%.2

This massive decrease is due to a number of factors, but has occurred primarily because MSK employs a multidisciplinary approach to treatment planning as well as careful upfront patient selection for robotic surgery or nonsurgical treatment. Importantly, although HPV-related OPC is a “rapidly emerging disease,” HPV-positive status is associated with a more favorable prognosis compared with HPV-negative disease.

HPV-positive OPC shares histologic features with HPV-negative OPC, but there are fundamental biological differences. For example, HPV-positive OPC exhibits activated mutations of PIK3CA, a loss of TRAF3, and amplification of E2F1. 7 This has important implications for targeted therapy.

In 2014, MSK’s Head and Neck Service began convening surgery, radiation oncology, and medical oncology specialists for a weekly disease management team (DMT) review of every patient case involving a diagnosis of squamous cell carcinoma of the oropharynx. Pathology and radiology results are assessed prior to case review by a multidisciplinary tumor board, and an individualized treatment plan is designed for each patient by team consensus.

Robotic surgery now allows for tumors from the back of the throat to be surgically removed in a minimally invasive fashion with optimal visualization through the open-mouth transoral robotic surgery (TORS) system. At MSK, a formal radiology review is performed to identify factors that lead to postoperative chemoradiation, including extra capsular spread and being at high risk for positive margins.

Only specifically selected patients who meet these criteria are offered TORS.

Full story:

Vaccine making medical history in Southampton

A POTENTIALLY life-saving cancer vaccine is being trialled for the first time in Southampton.

Michael Knowlton made medical history as the first person in the world to test a vaccine for his head and neck cancer, HPV 16, as part of an immunotherapy clinical trial by the University of Southampton.

It was an irritating cough which first prompted the 63-year-old, a company director, to visit his doctor in 2014, and tests later confirmed it was cancer. What followed was a procedure to remove the tumour from the back of his tongue which left him in intensive care.

At the end of gruelling rounds of chemo and radiotherapy he was told should the cancer return, his options for further treatment were limited.

It was then that Michael was referred to the clinical trial by the University of Southampton.

Michael took part in the first phase of the trial which recruited disease-free patients to see how they reacted to the vaccine in terms of side effects and to establish dose levels.

The trial was funded by Cancer Research UK. The vaccine ‘kick-starts’ the immune system to recognise the HPV16 cancer and destroy it before it has a chance to develop.

University of Southampton research sister Cristiana Goncalves said: “People like Michael are really special, these patients are all volunteers and Michael is currently disease-free. He doesn’t need to do this, it is purely for research which makes them even more special.”

Full story:

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I am very impressed by the recent Make Sense Campaign run by the European Head and Neck Cancer society (EHNS). 

Here is an infographic they put out in September for the European Head and Neck Cancer Week.

(I used Docufreezer to convert the graphics below from PDF form so that you could see them without having to click.)

The Make Sense campaign is one of a series of head and neck cancer awareness movements that have taken place in the world this year. They are all using social media to advertise their causes and its through social media that we became aware of them or reinforced our connection. Here is another interesting graphic from Make Sense. You can see these in their original PDF form together with other top notch resources on their webpage. https://www.ehns.org/site/

Together with the Swallows Charity in the UK and Beyond Five in Australia they are doing a sterling job of publicizing the warning signs of head and neck cancer and advocating for prevention and better treatment.

Swallows is a patient-led charity, like ours, but much bigger,  while Beyond Five and Make Sense are, or are part of, organisations run by medical experts. All of them make plentiful use of infographics, something we are emulating in our group by using committee member Olwen Williams’ skills.

You can see Olwen's infographics on this website under Printables. She can make graphics to order. This is a work in progress, started for WHNCD 2017 in July and undergoing constant improvement. 

The Swallows group has also produced some graphics which have inspired us but which your Investigator cannot find right now. Here is a photo of their banner with World Head and Neck Cancer Ambassador, Chris Curtis, on the right.  You can see our beautiful banner under About Us/Photos on this website. 

Beyond Five is famous for it's very clear and informative 3D animations of head and neck cancer anatomy. Do have a look at their website, if you find it hard to understand medical terms and procedures. They make it very clear.  https://www.beyondfive.org.au/

The patient-led group called Head and Neck Cancer Support Australia made an Australian patients' book which also contains New Zealand stories. Chris Curtis from the UK, above, pioneered the book, while Marty Doyle from Brisbane and Julie McCrossin from Sydney compiled the Australian version. Links Healthcare printed the book and recently sent us another 270 copies so that many new patients in New Zealand can receive them in a patient care pack. Here is a picture of the boxes delivered to my place last week: a welcome bounty. 

It used to be a lonely road that was walked by  head and neck cancer patients and their carers, especially if they had ongoing issues after treatment. But now there is a worldwide movement to connect us all and allow us to support each other and learn from each other. 


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There are a range of cancer treatments with mix and match combinations usually the approach of the day. Understanding how they work however is a challenge for the layman though the lead story this week offers a pretty good and accessible explanation for immunotherapy.

That’s followed by a few words of caution and a British celebrity success story.

# We must be truly exceptional at curing diseases in mice by now
# Never be afraid of failure. Remember, you can always be used as a bad example.
# It is impossible to dig only half a hole

Immune Therapies Take Center Stage in the War Against Cancer: Tips for Patients
The missiles doctors send to fight cancer in a patient have a new ICBM: immunotherapy. This revolution in cancer treatment has serious implications for patients and people wanting to prevent cancer.

For years the standard attack plan to fight cancer was catch it early, at stage I when it is most curable, and use surgery, radiation and chemotherapy to get the highest cure rates. But for the past several years and especially in the last few months, doctors and patients have new therapies to use to control the cancers. These new therapies are immunotherapy, and targeted treatments, precision drugs, improved hormonal agents, and biotherapies.

The most exciting of these new treatments are the FDA approved immunotherapies. For a long time, scientists have recognized that the body’s immune system has been sluggish to fight cancer once it has appeared.

Beginning in 1990 new types of treatments were developed that enhanced the immune system to overcome its otherwise low activity. The first was the drug ipilimumab (Yervoy), which targeted immune system blockade (CTLA-4) and resulted in increased immunologic T cells in the body to more effectively kill cancer cells. This was initially approved for advanced metastatic melanoma, but today it is also used in localized melanoma at high risk of recurrence, and is showing remarkable anti-cancer effects in combined treatments of lung cancer and other tumors. It was approved by the FDA “way back” in March 2011.

Then, another class of immunotherapy drugs was discovered that targeted another biological pathway (PD1-PDL1) that kept the immune system in check, preventing it from fighting cancer. The first 2 drugs used to stimulate the immune system nivolumab (Opdivo) and pembrolizumab (Keytruda) were found to produce remarkably long remissions in some patients with melanomas and kidney cancers. Today, these drugs are approved by FDA for use in many different cancers (lung, bladder, head and neck cancers). You have probably seen television ads for them without realizing that they represent the immunology of the future.

Most surprisingly, the FDA has even approved pembrolizumab for use not based on the type of cancer which a patient has (the standard approval mechanism in the past), but instead based on whether a cancer (regardless of cancer origin, like breast cancer or like lung cancer) shows unstable DNA changes (called microsatellite instability high, or MSI high). This is a first for the FDA, and a welcome change based on improved scientific discoveries.
Because of the success of nivolumab and pembrolizumab, other drug companies have produced drugs which also attach the PD1-PDL1 immune pathway and are now approved by the FDA, including atezolizumab (Tecentriq), avelumab (Bavencio) and durvalumab (Imfinzi). Oncologists and patients have many choices.

Thanks to pioneering work in laboratories, scientists have also been able to take the body’s immune cells and enhance them in test tubes to fight cancer or leukemia in a patient’s body. Inside a patient, immune T cells can kill cancer, but in the past were not active enough to control the cancer. By using special protein antigens, the activity of these T cells can be improved. The system is called CAR T cell therapy. On August 30, 2017, , the FDA approved the first CAR T cell immunotherapy of this type, called trisagenleleucel (Kimriah), to produce long remissions (probably cures) in children or young adults with acute lymphoblastic leukemia. Today, other antigens are being used to stimulate T cells to fight other leukemias, myeloma, lymphoma, and solid tumors like glioblastoma, to further extend CAR T cell therapy.

Immunotherapy is established as a very active part of anti-cancer treatments. Be sure you have the latest information to help you choose the best treatment for you. And remember to get your cancer preventive vaccines.

Full story:

Cancer cure is ‘pipe dream’, says world renowned doctor

(U.K.) A WORLD renowned cancer specialist says finding a cure for the disease is a “pipe dream” but that the future for cancer sufferers is positive.
Dr Siddhartha Mukherjee, 47, won the Pulitzer Prize for non-fiction in 2011 for his book The Emperor Of All Maladies: A Biography Of Cancer.

He told Desert Island Discs how the intricacies of the illness make it unlikely that we will ever be able to eradicate it completely.

Dr Mukherjee is the Assistant Professor of Medicine at the Columbia University Medical Centre in New York and studied at Stanford, Oxford and Harvard.
The father-of-two said: “This disease, I think, is not going away. The idea that we will erase it from the face of human history I think is a pipe dream. It is part of us."

“That’s not to be nihilistic about the treatment of cancer but it is to recognise that part of the complexity of treating cancer is that there are very few diseases where the fundamental of the disease is so locked in with the fundamental of who we are.”

Despite this, he still sees a positive future for cancer treatment.

He said: “In the next 10 years we are going to try to deploy [what we have learned about cancer] and it is like living on the edge of an experiment. We are going to ask the question if we do this systematically in cancers can we learn to treat cancers in a more rational and reasonable way.”

Full story:

Danny Baker. Not one for brooding

(U.K.)Danny Baker says: “Couldn’t be better,” when our waiter asks him how he is today. “Giving off sparks!” And, with the exception of the months he spent undergoing intense and gruelling treatment for the cancer of the head and neck that was diagnosed in 2010, the odds on him replying in precisely the same way on nine days out of 10 are high.

The radio presenter, comedy writer and one-time punk correspondent for the NME, was last contestant in and first voted out (“a tremendous joke in and of itself”) of the last I’m a Celebrity Get Me Out of Here! This excoriator of the “pin-headed weasels” and bean-counters of his radio employers BBC London, and chronicler of his upbringing in Bermondsey, south London, has one main aim in life: “To live for pleasure alone.”

But not everything can be turned into a joke. He always knew this book would be about his illness, from which he fully recovered – aside from an extreme sensitivity to spicy food that even today leaves his eyes streaming over his lunch – after a period of treatment during which he was unable to eat or drink, or even to turn his head from side to side.

“My first thought was to make it funny,” he says, and there’s no way you can do that, otherwise people will feel cheated, they’ll say you’re hiding stuff.” The upside, he’d been told, was that he had a good chance of survival; the downside was the severity of the cure. “You cannot take even a sip of water,” they said. “And the one lasting image I had was running a tap – when I could still get to the bathroom – and watching it run and overflow and just look at it and look at it.”

He says he doesn’t know what his wife will make of his account of his illness, although he’s told her “it’s a bit strong”; as a family, they rarely discuss it now that it’s in the past.

“I didn’t really learn any lesson out of it,” he tells me. “Terrible I know. I don’t appreciate life more, but then I couldn’t have appreciated life more.”

Full story:

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The above picture comes from the Macmillan website. It doesn't relate directly to this post but might tease the mind to figure out some controllable causes of cancer. 

Whether a patient, family member or friend, finding a perspective on cancer is always going to be difficult and the reams of stories, updates, advice and analyses probably don’t help.

The lead article below from the Economist offers one of the few `world view’ summations around and is worth a quick read through.


#The first piece of a puzzle is always correctly placed.
# Home is where you know which light switch to press.
# Jury duty is really the only time it is socially acceptable to judge someone as a group.

Closing in on cancer, Economist

(U.S.) THE numbers are stark. Cancer claimed the lives of 8.8m people in 2015; only heart disease caused more deaths. Around 40% of Americans will be told they have cancer during their lifetimes. It is now a bigger killer of Africans than malaria.

But the statistics do not begin to capture the fear inspired by cancer’s silent and implacable cellular mutiny. Only Alzheimer’s exerts a similar grip on the imagination.

Confronted with this sort of enemy, people understandably focus on the potential for scientific breakthroughs that will deliver a cure. Their hope is not misplaced. Cancer has become more and more survivable over recent decades owing to a host of advances, from genetic sequencing to targeted therapies. The five-year survival rate for leukaemia in America has almost doubled, from 34% in the mid-1970s to 63% in 2006-12. America is home to about 15.5m cancer survivors, a number that will grow to 20m in the next ten years. Developing countries have made big gains, too: in parts of Central and South America, survival rates for prostate and breast cancer have jumped by as much as a fifth in only a decade.

From a purely technical perspective, it is reasonable to expect that science will one day turn most cancers into either chronic diseases or curable ones. But cancer is not fought only in the lab. It is also fought in doctors’ surgeries, in schools, in public-health systems and in government departments. The dispatches from these battlefields are much less encouraging.

First, the good news. Caught early, many cancers are now highly treatable. Three out of four British men who received a prostate-cancer diagnosis in the early 1970s did not live for another ten years; today four out of five do. Other cancers, such as those of the lung, pancreas and brain, are harder to find and treat. But as our Technology Quarterly in this issue shows, progress is being made. Techniques to enable early diagnosis include a device designed to detect cancer on the breath; blood tests can track fragments of DNA shed from tumours. Genome sequencing makes it ever easier to identify new drug targets.

The established trio of 20th-century cancer treatments—surgery, radiation and chemotherapy—are all still improving. Radiotherapists can create webs of gamma rays, whose intersections deliver doses high enough to kill tumours but which do less damage to healthy tissue as they enter and leave the body. Some new drugs throttle the growth of blood vessels bringing nutrients to tumours; others attack cancer cells’ own DNA-repair kits.

Cancer may be relentless; so too is science.

The greatest excitement is reserved for immunotherapy, a new approach that has emerged in the past few years. The human immune system is equipped with a set of brakes that cancer cells are able to activate; the first immunotherapy treatment in effect disables the brakes, enabling white blood cells to attack the tumours. It is early days, but in a small subset of patients this mechanism has produced long-term remissions that are tantamount to cures. Well over 1,000 clinical trials of such treatments are under way, targeting a wide range of different cancers. It is even now possible to reprogram immune cells to fight cancer better by editing their genomes; the first such gene therapy was approved for use in America last month.

Yet cancer sufferers need not wait for the therapies of tomorrow to have a better chance of survival today. Across rich and poor countries, the survivability of cancer varies enormously. Men die at far higher rates than women in some countries; in other countries, at similar levels of development, they do comparably well. The five-year survival rate for a set of three common cancers in America and Canada is above 70%; Germany achieves 64%, whereas Britain manages a mere 52%. Disparities exist within countries, too. America does well in its treatment of cancer overall, but suffers extraordinary inequalities in outcomes. The death rate of black American men from all cancers is 24% higher than it is for white males; breast-cancer death rates among blacks are 42% higher than for whites. A diagnosis in rural America is deadlier than one in its cities.

Variations between countries are partly a reflection of health-care spending: more than half of patients requiring radiotherapy in low- and middle-income countries do not have access to treatment. But big budgets do not guarantee good outcomes. Iceland and Portugal do not outspend England and Denmark on health care as a proportion of GDP, but past studies show wide variation in survivability in all cancers.

Taxes and budgeting are a lot less exciting than tumour-zapping proton beams and antibodies with superpowers. But the decisions of technocrats are as important as the work of technicians. Cancer kills millions of people not simply for want of scientific advance, but also because of bad policy.

Full story: https://www.economist.com/news/leaders/21728893-science-will-win-technical-battle-against-cancer-only-half-fight-closing

 Labour (Ireland) wants the HPV vaccine to be rolled out to boys sooner rather than later

(Ireland) The plan was originally to roll the free vaccine out to boys – but this has yet to happen.

Labour’s Alan Kelly has said his party will table a motion calling for the HPV vaccine to be extended to boys.

Speaking at the party’s think-in in Athy in Kildare, Kelly said he has been working with Health Minister Simon Harris on the initiative.

From the years 2014 -2015, there was an 87% uptake in the HPV vaccine – the highest since the programme began in 2010. However, immunisation rates have now fallen below 50%.

The health minister, along with other politicians, have attributed the fall-off in the uptake to misinformation being circulated from anti-vaccine campaigners.

Full story:

 New Zealand has had free HPV vaccines for boys since January

New treatment for head and neck cancer gets approved
(U.K.)Scottish patients will be the first in the UK to benefit from potentially life-extending immunotherapy treatment for head and neck cancer on the NHS.

The Scottish Medicines Consortium (SMC) have approved nivolumab for these types of cancer that are difficult to treat and often require many invasive and complex therapies. Studies have shown that double the number of patients treated with nivolumab were still alive after one year, compared with those treated with standard chemotherapy.

Head and neck cancer was the sixth most common cancer diagnosis in Scotland in 2015 with 1,283 and was within the top ten cancer related deaths at 452 people.

Gregor McNie, Cancer Research UK’s senior public affairs manager in Scotland, said: “Head and neck cancer is very difficult to treat once it has relapsed or spread, and options, including surgery and radiotherapy, are limited. So it is fantastic news that nivolumab will be available for some patients in Scotland with this devastating disease.

“Around 1,300 patients are diagnosed with head and neck cancer in Scotland every year.

Full story:

Queenslanders in wealthy areas less likely to get head and neck cancer
(Australia)Wealth has been revealed to be a major driver in cases of head and neck cancer in Queensland with those in disadvantaged areas 1.7 times more likely to be diagnosed than affluent areas.

According to data from Cancer Council Queensland, living in remote areas was another factor, with 20 in every 100,000 people diagnosed with head and neck cancer, compared to 14 in every 100,000 in metro areas between 2010 and 2014.

Cancer Council Queensland chief executive Chris McMillan said this type of cancer often went undiagnosed because the symptoms were easy to miss.

“You think I’ve just got a sore throat because it’s hung around or I’ve just got a hoarse voice because it’s hung around and that could be early warning signs of cancer,” she said.

Distance to health services was another factor which contributed to the differences.

Full story:




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Network News 18 September, 2017

Responding to patients' post treatment concerns

As I recover from my own surgery, I read the Facebook discussions of our members. One topic that continues to arise, and where patients, carers, and family express dissatisfaction, is the period of time where patients are post treatment. Concerns expressed cover issues of psychological support, dental care and rehabilitation, surveillance of ongoing health and well being, access to services, and clinicians, and the role of general practitioners in post treatment. 

The national Standards of Service Provision for Head and Neck Cancer details the services patients will receive throughout their cancer journey. Standard Nine details the services for follow up and surveillance. There are two parts to the standard:

        9.1 Patients with head and neck cancer have access to a care coordinator and to a range of experienced rehabilitation professionals throughout the course of their cancer journey, in conjunction with their GP. 

The rationale for the standard states:

Patients with head and neck cancer are a heterogenous group likely to present with complex or long-term needs. Early access to rehabilitation services is associated with better outcomes and can prevent secondary disability. 

       9.2 Follow-up plans include clinical review by appropriate members of the Multi Disciplinary Team (MDT), working in conjunction with the patient, the family/whanau and their GP.

This rationale states:

Patients with head and neck cancer are at risk of: persistence of disease after treatment, local and regional recurrence, new disease. Persistent recurrent or new disease may present to any member of the MDT as symptoms or functional deterioration.  Early detection of and intervention for new problems lead to better outcomes. 

Each patient needs to be able to contact, and communicate with their care coordinator on a regular basis to ensure they access the rehabilitation support. You should have a copy of your follow up plan which details when you will be followed up and how your cancer will be monitored.

Do you have the name and contact details of your care coordinator?

Do you have a follow up plan? 

For each region we have created a group with details of the care coordinators and their contact details. http://headandneck.org.nz/groups

 If we have missed anyone, please let us know and we will update the information. It is critical that every patient, carer, and family/whanau member has access to this information. 

Ask for a copy of your follow-up plan. If your MDT does not have a model available, you can download and print one here, and give to your clinician. https://www.instituteforquality.org/cancer-survivorship-care-plan-template

Network News

Our Network continues to grow. We are delighted to have 514 Twitter followers, 182 people in our Facebook group, 106 website members, and 395 LinkedIn contacts. If you want to connect with us through any of these channels you can do so here. Our website, http://headandneck.org.nz/, Facebook Group, Twitter, https://twitter.com/HeadNeckNZ, LinkedIn, https://www.linkedin.com/in/headnecknz/

New Members

We welcome to our community, Jay Maxwell, Rochester, MN, Heather Jean Anderson, Timaru, Janet Brill, New Plymouth, Emma Wilkins, Staffordshire, Sharon Agger, Rotorua, Jane Gregory, Hamilton, Mere Manning, Napier and Ian Sell, Auckland.

As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. 

Popular Posts
As new people join our network or are diagnosed with head and neck cancer they access a number of our articles and resources. For the last two weeks these were the most read posts. 

Tuesday Health News - Mental Health and Vaccinations

Mental health has featured this week as political parties made promises to provide funding, and there was suicide prevention day on Sunday.  National Party MP for Tamaki, Simon O'Connor made a mistake when he seemed to equate suicide and euthanasia, which earned him a rebuke from PM Bill…

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Monday Guest Editorial

This weeks Guest Editor is the Network Chair, Diana Ayling, these are her Notes from Mill Island

Cancer. The very word is intimidating, and strange. What does it actually mean when they tell you, "you have life threatening cancer."? It means you are growing some mutant, and dangerous cells that intend to grow structures which will prevent vital aspects of your bodily functions to continue. So really,…

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I'm an atheist, but ... Thursday Investigator

After my cancer treatment three years ago I was living alone in a new town, looking for ways to give back and to connect to my community. Like plenty of cancer survivors and carers before me I volunteered to help at the local Hospice. 

What  sticks in my mind about my Hospice volunteer stint is a conversation I heard during the three-day orientation course. We were addressed by a spiritual adviser. This’ll be good, I thought. I love a bit of philosophising. After…

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Ka kite ano,

Diana Ayling


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General Practice Funding Fiasco

Why do some GPs charge so much more than others? It's all to do with a faulty funding formula which both major parties have promised to fix. Looks as if they still don't get it. We asked one of our members, Dr Andrew Miller, to comment. 

How you ever wondered why some general practices charge adults $18 and others charge anywhere from $35-65?. Well it's because the general practices are given different levels of government subsidy based on a historic and grossly inequitable funding formula which our current government has refused to review for the last nine years. Surprise, surprise but the election circus has seen Labour promise to review the general practice funding fiasco and National has followed suit.

However, neither major party seems to have any understanding about how funding is actually allocated so are both still way off the mark. It may be hard to believe but funding isn't based on the need of the patient. Funding is given to general practices for everyone enrolled in that practice not whether they can afford to pay for access or not. This system has 700,000 high needs patients paying high fees and 700,000 wage and salary earners paying low fees - nothing to do with the actual need or income of the patient. The better funded practices offering cheaper visits are called Very Low Cost Access. The lower funded practices charging the higher fees are called Access Practices.

Some practices have as low as 8% of their population deemed high needs/low income but can give the other 92% of their patients cheap visits. On the other hand some practices have close to 50% of their patients high needs/low income but don't get extra funding for these patients and have to charge them higher fees. This is clearly ludicrous and unjustifiable.

So what are the major parties promising? Both have said they'll give extra funding to all practices to give all high-needs/low income patients additional funding to allow cheaper visits. National would set the cheaper visit at $18 and Labour at $8. This is a really good idea but then both parties' policy promises unravel because they're going to leave the 700,000 wage and salary earners in the historically better funded practices still getting cheaper visits. So if Labour get in they've said some practices can offer $8 visits for all patients (regardless of need or income) and some practices can offer $8 visits for their higher needs patients and $32 for everyone else. National is $18 for all high needs patients and $35-65 for the rest. This remains grossly inequitable, illogical and may see the bankruptcy of about half of all general practices in NZ. If you fill your car up in one place for $1 but it cost $4 down the road I wonder where you'd decide to fill the tank? Don't you just love politicians!

Dr Andrew Miller

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A few weeks ago we had a post containing pics of animals we acquired to help us get through treatment. We also have pets of the past that have given people pleasure as they travel through this head and neck cancer-affected life. Here are some beautiful pet pics I could not fit in last time.

Here are Molly's beloved dogs, Frostie and Petey.

Another pair of dogs belonging to Kathie and Greg who live on a farm near Whangarei.

What about Diana's rescue cat Gina who is a real character? She steals the neighbour's things with one of her favourites being microfibre cloths. 

Tina's cat takes pride of place.

Ann looked after her son's dog during treatment and he followed her around everywhere

Narelle and Shane's dog loves selfies. 

And finally, Pat and Bernard with a lovable ball of fluff a fair few years ago

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