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Maureen Jansen's Posts (102)

What are our values? Friendly Friday.

When we became an incorporated society in mid-2016, we had to document our aims and values etc. We often talk about our aims: to connect, support and advocate. What about our values? Written by Diana in the first rush to incorporation, they are that we should be engaged, respectful, informed and caring. 

Now that we are 10 months down the track, it is time that we take another look at our values, break them down, perhaps change them. A poll on the committee page showed the following values as the top four: 

  • engaged (as patients in our own care)
  • respectuful
  • evidence based
  • supportive

Respect is an important one. Respect and empathy for fellow patients and carers coupled with respect and empathy for the health professonals who deal with us. We are all in this health care universe together with its miracles and frustrations, benefits and deficiencies. We should all be working to make it better. 

When we reaffirm our values in the near future, I'll ask our graphic artist, Olwen, to make us an infographic that we can spread around Right now you will have to put up with a sketch I made to break down the values and show them graphically.


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More on oral care products and Oral 7

There's some confusion in our head and neck cancer universe about the best regimen for oral care.

In many parts of the world, fluoride trays are used but not so much in New Zealand. Only one of our members has the trays, given to her by the Otago Dental School.

In most parts of NZ, we are advised to use Colgate Neutrafluor 5000 toothpaste, the toothpaste with the most fluoride. I believe "neutral" fluoride is a type that doesn't stain the teeth. We're not advised about products to ease the discomfort of dry mouth but are encouraged to use salt and baking soda rinses by day and vegetable oil at night if it is a serious problem. Some hospitals supply their patients with  the expensive toothpaste, which costs us about $17 a tube. 

Biotene products are well known. I have tried  Xerostom products which are readily available. 

But we have been promoting the use of Oral 7. I heard about this range from the Oral Cancer Foundation initially and we now have contacts with members of the company in Australia and New Zealand. While we can order the products at cost price, it has to go through our network and I'm getting a bit too busy for that. I'll be handing the task over to another person early this year. We'll let you know. 

Oral 7 has four different enzymes which are designed to create the effect of natural saliva, often lost because of surgery and radiation. These are Lactoperoxidase & Glucose Oxidase to inhibit the growth of harmful bacteria, Lactoferrin to deprive harmful bacteria of iron and Lysozyme, which destroys the cell walls of bacteria.

Here is a very informative brochure about the contents and use of Oral 7 products designed for the Asian market. It is much more detailed than the brochures used in New Zealand and explains it all much better than I can. 


It's way outside my realm of expertise to promote a product but Oral 7 seems to have been approved by the dentists and hygienists I have spoken to and people seem to like it. I strongly recommend that you ask your own dentist or hygienist. Everyone's oral health is going to be different. 

My personal experience is that I have a much operated on and radiated super-sensitive mouth. I use any product that does not sting like mad. The Oral 7 toothpaste stings more than Neutrafluor, the mouthwash is good in a spray bottle watered down 50/50 and the gel is excellent, doing all it promises. I've tried the Xerostom gel which provides some relief but tastes ghastly to me. I used to use Biotene products (pre-cancer) but am under the impression that they changed the formula for the worse when the company changed hands. I don't know if that has been rectified yet. 

Conclusion: I don't know. I would follow the instructions of your dentist and keep using Neutrafluor to prevent tooth decay. I recommend the Oral 7 for dry mouth relief but by mixing it up, we are not getting the full value of the three Oral 7 products, the paste, mouthwash and gel. 

Still more investigation to do and I haven't mentioned the tooth mousses which are also excellent for remineralising the teeth. Or the natural alternative sweetener, Xylitol, which, like fluoride, puts a dampener on harmful bacteria. 


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The number of after effects of cancer treatment are many and often an on-going challenge. Lymphoedema - that swollen, floppy jowls effect - and loss of hearing are two common examples and while not life threatening both detract from quality of life. The two stories this week suggest there may be, at least partial, solutions.


  • Good thing it's easy to turn a 7 into an 8, because it takes awhile to overcome muscle memory when writing the year.
  • There is something unsettling about clicking on a button that says "submit".
  • You can substitute Miranda rights for wedding vows. Verbatim.


Pneumatic compression promising for lymphoedema
(U.S.) (HealthDay)—One treatment session with advanced pneumatic compression is associated with reduced cancer-related head and neck lymphedema, according to a study published online Nov. 13 in Head & Neck.

Harvey N. Mayrovitz, Ph.D., from Nova Southeastern University in Fort Lauderdale, Fla., and colleagues assessed patient-reported comfort and potential clinical benefits of advanced pneumatic compression treatment for cancer-related head and neck lymphedema. The authors obtained multiple face and neck measurements on 44 patients with head and neck lymphedema before and after one treatment session.

The researchers found that most patients reported the treatment was comfortable (82 percent) and that they were feeling better after treatment (61 percent). The vast majority (93 percent) reported that they would likely use the therapy at home. There were overall small but statistically significant reductions in composite face and neck metrics. There were no adverse events reported.

"Results found the treatment to be safe, easy to use, and well tolerated, while demonstrating edema reduction after a single initial treatment," the authors write.

Full story:

Inner-Ear Buildup Of Cisplatin May Cause Hearing Loss
(U.S.) Between 10 and 20% of all patients with cancer are prescribed cisplatin or another similar platinum-based agent, putting thousands of Americans at risk for hearing loss (ototoxicity). In fact, 40 to 80 percent of adults and at least half of children experienced hearing loss after cisplatin treatment, according to a recent article published in Nature Communications.

“As the population of cancer survivors continues to grow, so does the importance of addressing the long-term sequelae of cancer treatment,” the authors wrote. “This hearing loss can result in multifaceted decrease in quality of life, and in pediatric patients it can impact social and academic development.”

Cisplatin is a chemotherapy agent delivered intravenously.

The study evaluated why cisplatin can be so damaging to someone’s ability to hear. Through mouse models and studying the ear anatomy of deceased human patients, they found that while the body eliminates the drug in most other parts, cisplatin sticks around in the inner ear and accumulates over time – it can be there for months, or even years. Higher Buildup was seen in the single pediatric ear observed, despite the child being prescribed a lower dose than most of the adults.

The stria vascularis – a part of the ear that plays a key role in detecting sound – accumulated the highest buildup of cisplatin.

“Our findings suggest that if we can prevent cisplatin from entering the stria vascularis in the inner ear during treatment, we may be able to protect patients from developing cisplatin-induced hearing loss,” study author Lisa L. Cunningham, Ph.D., chief of the National Institute on Deafness and Other Communication Disorders (NIDCD) Section on Sensory Cell Biology, said in a release.

These findings are different from those found in previous research.

“Though previous work has focused upon identifying the pathways responsible for cellular hypersensitivity to cisplatin within the cochlea, our results suggest that it is hyper-accumulation and not hypersensitivity that drives cisplatin ototoxicity,” the authors wrote.

The study authors advocated for frequent hearing tests to be done in patients currently on cisplatin regimens, and for the long-term follow-up care of survivors as well. If caught early enough, hearing rehabilitation can help.

The authors added these findings might eventually lead to local administration of an agent to the inner ear that would block cisplatin uptake.

“Our results point to a strategy aimed at prevention of cisplatin update into the stria vascularis as a promising therapeutic approach to prevention of cisplatin ototoxicity,” they said.

Full story:


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Auckland Meetings 2018

Not long to go now and we'll be back into the swing of 2018, Domain Lodge meetings included.

As you know we have had to change our Thursday meetings to first Mondays because of pressure on Domain Lodge's parking facilities. 

Meetings will be at 11.30 to 1.30. Bring your own lunch if needed. 

Attached is the programme for this year so far with two slots unfilled. The programme will be amended soon to include two evening meetings during those months when Mondays are public holidays. I haven't sorted these out yet but will get the programme to you ASAP. 


Our first meeting is therefore on 5 February. Muggins, despite living in New Zealand for 71 years, has just realised that that is the day before Waitangi Day. Some people might be taking the Monday off and going on holiday. Never mind, we will proceed with our meeting, record the information and share it online. I'm looking forward to being united with the usual suspects and seeing any new people who can attend. 

Our first speaker of the year is head and neck and ENT surgeon Dr Eric Levi. Eric, who is from Melbourne, is working at Starship for a year. He is no ordinary surgeon but a meta-surgeon, one who spends a lot of time thinking about and discussing his craft. He keeps a blog at https://ericlevi.com/blog/.  You might like to scroll down and read Eric's blog on head and neck cancer published on WHNCD last year. 

Eric's talk is entitled: You Matter: How Patients Change Health Care.
Below is his full title.
Mr Eric Levi, FRACS
MBBS (Melb), B.Sc, PGDipSurgAnat, MPH&TM
Ear Nose & Throat, Head & Neck Surgeon

Hope to see Aucklanders and anyone having treatment in Auckland at the meeting - or we might catch up with you in March.

In my new career as an event organiser, I have much to learn:)



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The weather with you: Friendly Friday

Everywhere you go, you take the weather with you.

Neil Finn's song is so right. Yes we make our own personal environment and no we can't control the actual weather - we have to put up with it.

Although, maybe it's not too late to stop the climate changing.

Condolences to everyone experiencing extreme weather conditions right now from our people in Greymouth enduring floods, to folk on the east coast of the US going through bitterly cold weather, to people in North Africa seeing the Sahara Desert coated with an icing of snow. 

Here in Auckland we had an early drought which broke with a fierce storm closing our North Shore approach to the Harbour Bridge. Now we are back to beautiful balmy summer weather. 

Here is a picture of the morning sun shining on the Waiwera Estuary this week. 

A Shakespeare quote from Sonnet 33 comes to mind where he refers to the morning sun as, "Gilding pale streams with heavenly alchemy." 

And I hope that we can create a positive climate for head and neck cancer patients in 2018. 

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Funding for Keytruda in 2018?

Keytruda, the immunotherapy drug, is expected to be registered in New Zealand this year for head and neck cancer, says a spokesperson from the drug company Merck.

Once it is registered Merck will make a submission to Pharmac for funding.

At the moment, it can be provided in private clinics but like all of these unfunded drugs it is very expensive. Givealittle accounts are often formed so that patients can access a drug that offers some a small hope for a better outcome if the cancer has spread.

Keytruda works better for some people than others. It can depend on the “biomarkers” on your tumour, as explained by the spokesperson.

Lung cancer is a particular example where patients may be tested for a number of genetic mutations and /or proteins such as PD-L1 which will provide the treating oncologist with important information regarding the treatment options for the patient.

For head and neck cancers, testing for biomarkers is also important as it allows the treating physician to make informed choices between chemo-radiation and immunotherapy options.

Keytruda is suggested or indicated for the following cancers in NZ

  • Melanoma

  • Small cell lung carcinoma

  • Other lung cancers

  • Relapsed Hodgkin's Disease

  • Some urothelial carcinomas

It is funded for melanoma but not any of the other cancers listed.

Its scientific name is pembrolizumab. (Drugs ending in -mab are monoclonal antibodies. These drugs engineer our immune system to attack the cancer.)


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Happy New Year

Good wishes to all our members and to people affected by head and neck cancer everywhere.

Let's hope the new year ushers in good things for those of us in this corner of the health care universe. Always hopeful. Always ready to support those who need help on their head and neck cancer pathway. 

There's nothing magical about a new year in my book. It's what we make it, a time to reflect, to make plans, to throw out the things that didn't work and look for things that do. 

Maybe that's what Basho is saying in this haiku.

Along my journey  

through this transitory world,  
new year's housecleaning
                                        Matsuo Basho

And our own resident visual poet, Olwen, has created a New Year's Card for you all. 

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A kiwi blessing for Christmas

May the rain fall on the cracked earth

May the gaps in society be filled
May the earth get back on its axis

May the rivers be cleaned
The kauri saved
And the mountains covered in snow

May there be new treatment for metastatic head and neck cancer
May Pharmac fund that treatment for us all.

May pain be eased

May the horizon be clear
With the islands sparkling on it.

May we wear our scars with pride
May we see a deeper beauty.

May we connect ...

Ngā mihi o te Kirihimete me te Tau Hou
Merry Christmas and Happy New Year

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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 prohibitive for many. News then of a low cost breakthrough must be a brilliant Christmas present for many.

# Everything's cuter when it's furry, except for spiders

# The phrase "well done" for steaks was probably invented by a guy who didn't want to admit that he burned his steaks.

# Is a night of opening presents really more satisfying than a years worth of naughty behavior?


The $1 device helping cancer patients speak again
(India) Across the country around 30,000 patients a year are diagnosed with cancer of the larynx. For those in the latter stages of the disease the only option can be to have the voice box removed, leaving the patient without a voice.

Replacement prosthetic voice boxes can cost up to $1,000 (£750) which for many patients is unaffordable.

"The majority of our healthcare is private and cost prohibitive. That was the reason that I felt that there was a dire need to actually help these patients speak again, because speech is a right and not a privilege," says Dr Rao who is a surgical oncologist at Health Care Global in Bangalore.

Feeling useless
Naryan Swami had his voice box removed as a result of cancer, and not being able to speak had a huge impact on his life.

"I was a union leader in the company I worked for. I used to help other workers. Without my voice I was useless for them," he says.

"Losing my voice was losing my life, I wanted to kill myself. I couldn't do anything that I enjoyed."

After consultations with patients like Mr Swami, Dr Rao started to wonder if there was something more he could do to help.}

When a friend asked him why he didn't design his own affordable voice box, it was the push he needed, and along with a friend, Shashank Mahes who is an industrial engineer, they set to work researching and developing.

Two years later, the result was the Aum voice box - costing one dollar (75p). It's a small device measuring roughly one centimetre that is inserted into the throat of patients who have had their voice box removed.

It has given patients like Nalini Satyanarayana a new lease of life. She is now able to speak and spends her time supporting and counselling other patients who have undergone throat surgery. "So I bounced back and I'm a living and smiling example of life after cancer," she says.

Full story with video:

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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 the next 18 months developing recommendations to create a no-fault system that doesn't distinguish between sickness and accidents.


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Season of goodwill: Friendly Friday

Friendly Friday is about counting our blessings. Christmas , for all its crass commercialism, is called the season of goodwill. 

Today we want to thank the health professionals who care for us: nurses, surgeons, speech language therapists, oncologists, all the people who make up a head and neck cancer team. 

Olwen has made a virtual card to show our appreciation. 

I found the following poem in a book in a second hand bookshop recently. It speaks to the connections between us and the natural world, connections we can forge with one another too.  A contrast to the issues that divide us in the world today. 


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A recent NZ Herald story about a young woman with recurrent nasopharyngeal cancer aroused our interest in the immunotherapy drugs Keytruda and Opdivo, approved in NZ but not funded for HNC. 

Eve McGauley was only 15 when she contracted the disease. She went through the awful treatments, was in remission and then the cancer struck again. Her family decided to try Keytruda which worked well for her. Her tumours have disappeared and she feels well for the first time in ages. This is not a cure, says her friend on her Givealittle page,  but it is giving Eve more quality time. It is not yet known how long the Keytruda effect works. 

Keytruda and Opdvio are the advance guard of a promising but not yet curative treatment for head and neck cancer: immunotherapy drugs. They are also called checkpoint inhibitors. They inhibit the ruses cancer cells use to deceive the immune system into ignoring them. So far they seem to work only for some people and the median improvement in survival overall is measured in months not years. They are approved by the FDA only for use in advanced cases (metastatic or recurrent cancer) so are not used in front-line care yet. 

The future looks as if it will be in combinations of these drugs, maybe with chemotherapy. But it's so exciting to see Keytruda work for a New Zealander. It's unfortunate that her family has had to pay for it up till now.  

Because her GAL account has raised over $60,000, she now qualifies for free provision of the drug by the manufacturer, Merck. 

I'm a bit confused about these treatments in spite of the many articles coming out about them so I posed myself a series of questions to find answers to

1. What are checkpoint inhibitors?

Quite simply they are immunotherapy drugs that turn off those checkpoints in the immune system that stop T-cells from attacking cancer cells. 

2. What do these drugs do?

The immune system (using the killer T-cells) should kill cancer cells but these cells are smart and can use the "PD-1" pathway to hide from T-cells. When the T-cell approaches the cancer cell, the latter cell has a protein called PD-L1 which interacts with the PD-1 protein on the T-cell and tells it there's nothing wrong with it and it doesn't need to be destroyed. (See picture above: Keytuda is the antibody.)

This is where Keytruda and Opdivo and other similar drugs can step in and turn off that signal. 

3. Can you test someone's cancer to see if it will respond? 

Some cancer cells have large amounts of PD-L1 which helps them hide better from T-cells. Presumably these "biomarkers" will lead to a better response to checkpoint inhibitors. No biomarker is perfect, say scientists, but testing for expression of PD-L1 is potentially helpful. (PD = programmed cell death)

4. What are the side effects?

Yes, there are side effects, even in these seemingly "clean" drugs. Taking the brakes off the immune system can cause it to attack other, healthy parts of the body as with an auto-immune disease. Interestingly,  Eve has reported no side effect apart from tiredness. 

5. What is the difference between Opdivo and Keytruda? 

From what I can tell they are very similar but are administered differently. Keytruda is made by Merck and Opdivo by Bristol Myers. Someone said they are like Coke and Pepsi.

6. What other cancers are they used for?

Pharmac funded Keytruda for melanoma patients last year. It is also used for some other cancers. See links below.  

7. When will one of these drugs be funded in NZ for HNC?

Not sure. At the moment Keytruda is available in private clinics all over New Zealand. These are not miracle drugs for most people and do not have a huge survival advantage over traditional treatment. About 5% of patients in the latest big trial achieved a complete response to Keytruda (all tumours gone). Pharmac will no doubt proceed with caution as it usually does. 

As research and trials continue, these drugs might be used in front-line treatment but at the moment they give a sliver of hope to people with advanced disease. The first bit of hope in a very long time. 


Below are the scientific names for the two drugs plus a defintion of each from Wikipedia, lightly edited for brevity.

Pembrolizumab (trade name Keytruda) is a humanized antibody used in cancer immunotherapy. It blocks a protective mechanism on cancer cells, and allows the immune system to destroy those cancer cells. It targets the programmed cell death 1 (PD-1) receptor.

Nivolumab (Opdivo) works as a checkpoint inhibitor, blocking a signal that would have prevented activated T cells from attacking the cancer, thus allowing the immune system to clear the cancer. It was brought to market by Bristol-Myers Squibb.









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The weekly round up from one of our members, the last for 2017. Normal service will resume in mid-January

As various authorities are fond of pointing out – the cost of cancer treatment and medication can be extreme. Generic drugs are common and there are others (not counting dubious `natural’ drugs) which are not as shady or suspect as they may sound.

The second story is just a round up from the India Times of what’s happening in the world of cancer treatment.

#Growing up in the 90s its weird to think that today Hugh Hefner is more respected than Bill Cosby.

# Somewhere out there is the fastest two year old alive, giving their parents hell.

# If your neighbor has wind chimes, you have wind chimes.


Understanding off-label drug use

(U.S.) Whenever we get sick, we hope to be prescribed the leading approved medicine for whatever ailment we’re facing. But for some diseases, especially more rare cases like mesothelioma, there may be fewer options available that have been approved by the Food and Drug Administration. Fortunately, doctors have the option of turning to off-label or unapproved uses of drugs to treat these patients.

What Are Off-Label Drugs?
While the term “off-label drugs” may seem a bit scandalous or dangerous, it is actually perfectly legal. To start from the beginning, a drug or treatment can first become approved by the FDA after going through a series of clinical trials to prove that the drug is safe, works the way researchers expected, and is effective in treating whatever condition it is being tested for.

Off-label drug use is especially common in cancer treatment. Experts say this is largely the case for older, established drugs, like the chemotherapy drug carboplatin which has been widely used since it was developed in the 1980s. Though drugs like this have proven their efficacy for a number of cancers and diseases, it can be a costly and lengthy process for pharmaceutical companies and researchers to go through all the formal testing for the FDA to approve the drug for its new uses.

For instance, though carboplatin is not FDA approved for the treatment of mesothelioma, it is often used in combination with alimta and other chemotherapy drugs for these patients. It has been actively tested in clinical trials for mesothelioma with positive results, extending life expectancy to 9 and 12 months in two separate trials. However, there would still be much more testing and cost involved to get this chemotherapy drug approved for the rare cancer. the treatment of some mesothelioma cases because of their similarities.

The Importance of Being Informed
It can be difficult to know about all the promising drugs and treatments being used today that haven’t been approved because while unapproved uses are legal, marketing of these unapproved uses is not. Overall, there’s a lack of information readily available about these treatments and their potential in unapproved cases, for both researchers and patients. In general, investigating clinical trials and other researchers’ findings are crucial in better understanding the off-label uses of these treatments alone and in combination.

In some cases, it can also be difficult to have these treatments covered or reimbursed by health insurance. Sometimes, the companies explain that because the drug is still “experimental,” it will not be covered. If patients are receiving these treatments in clinical trials, some clinical trials have coverage, while others might have other funding available to cover patient costs.

Full story:

A view from India

Our first philosophy is prevention: Dr Vishal Rao

(Trends are different in NZ where tobacco-related HNC cases are reducing and HPV related cases increasing)

In an interview with ETHealthworld, Dr Vishal Rao, Consultant-Head and neck surgery, HCG, talks about trends, challenges and HCG's approach to head and neck cancer. Edited Excerpts:

(HCG =Health Care Global Enterprises)

Trends in head and neck cancer today

Today we know that head and neck cancer is one of the most preventable cancers. More than 90 percent of these cancers are related to tobacco and over the years this trend is increasing. Today we see more of cancer in people in their 20s to 40s. A newer trend that we are witnessing is infections causing cancer. Human papillomavirus has caused one of the single most important rises in cancers today. In addition, sharp teeth have been known to be an etiological agent than a causative factor for mouth cancer especially in tongue cancers. These trends have been quite alarming in the recent years.

AT HCG we have differentiating points on how we deal with head and neck cancers. We have prevention to precision and personalised medicine approach, and the idea being that all cancers cannot be treated the same way. The first philosophy of ours is prevention for which we have been very actively assisting the government in reducing the consumption of tobacco and thus reducing the head and neck cancers. That is one of our primary goals as we don’t want to have more and more of head and neck cancers but we want to have a healthy society.

Beyond that we look at early detection and we have been working a lot on picking up early biomarkers. We are looking at liquid biopsies; we are looking at a lot of research that is trying to pick up cancers at a very early stage. Our philosophy has been on personalised and precision medicine. We at HCG are working very closely on trying to understand why some respond to chemotherapy and others don’t, what were the genetic factors that try to determine, where the tumour is going to respond in certain people and what it does to be resistant in certain people. That is the approach that we have been advocating to play a differentiating factor to improve outcomes in cancers.

Impact of Robotics in head and neck cancer

Robotic surgeries have made a significant leap in head and neck cancers. The most area where we are making a difference is Transoral Robotic Surgery (TORS) which has been able to help the surgeons to gain access to areas in which we earlier needed to open up the entire digestive track. So with TORS' beautiful magnification and 3D visualisation, we are virtually able to see it inside the patient’s own tumour or organ and able to operate the thing with very fine precise instruments that have much better controls than your own hands.

Innovations at HCG

AT HCG we have always believed that speech and communication is a right to freedom of speech, justice and dignity. Thousands of Indians are bereft of this because of the cost alone. Currently the two or three popular devices cost somewhere between 400 to 1000 dollars. So we felt the need whenever we saw a labourer undergo throat cancer surgeries, lose their voice box and having the intense desire to speak. We wanted to innovate something that disrupts the entire philosophy of it and try to make speech and voice more of a right and not a privilege. So it took a couple of years to innovate this voice box and what we came out with was a one dialogue speaking device made up of world's best medical grade platinum silicone that currently is giving voices to about hundreds of patients who have never spoken before and some who spoke again after 10-15 years.

Full story:

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Christmas Do: Friendly Friday

We're a national network with members from all over the world as well as NZ. But we started with our little group of Auckland stalwarts and branched out from there. Today, Thursday, the Auckland Support Group had its last meeting of the year, not at Domain Lodge, but under the spreading chestnut (?) tree in the Domain itself.

Thanks to the people at the Wintergarden Cafe for letting us commandeer their seating. 

We had seventeen people present: Pauline, Maureen, Diana, Adam, Peter, Earl, Mac, Esther, Jill, David, Kenny, Graeme, Tu, Judy, Warren, Anthony and Kathy. We each brought a Christmas present to share and all of us took turns having a photo in the Santa hat. 

We expressed our sadness at the passing of Damon Heke.

Each person described their hopes for 2018 - little things like world peace, better treatments for metastatic head and neck cancer and an ever stronger network. 

It's a privilege to be connected with people who share a desire to help and support each other. 

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Let there be light: Weds Weekly

Another Weekly Wednesday round-up from one of our members. The video below is from a site that explains the near infrared photoimmunotherapy trial mentioned in the first article. 

While immunotherapy drugs and robotic surgery advances tend to dominate the new treatment spotlight there is much going on - such as the treatment discussed in the lead article this week.

That’s followed by a vaccination plea – treatment is all well and, hopefully, good, but prevention is obviously best.


# The song "Santa Claus is Coming To Town" is just 3 minutes of threatening kids.

# What if the culture of taking selfies has been propagated just to make our younger generations more comfortable with constant surveillance?

# Remember how futuristic the "21st Century" sounded?


Japanese clinical trial imminent for advanced cancer treatment

(Japan) Advanced stage cancer patients with tumors that are inoperable or resistant to chemotherapy could soon be treated using near-infrared photoimmunotherapy (NIR-PIT), a promising technique likely to undergo a clinical trial in Japan as early as this year.

Preparation is under way for the clinical trial of the therapy developed by a Japanese researcher with a renowned U.S. health institution. It is expected to involve patients with head and neck cancers.

Hisataka Kobayashi, a doctor at the U.S. National Institutes of Health (NIH), says the trial comes amid growing expectations that the new cancer immunotherapy will be put to practical use on advanced stage patients.

“NIR-PIT can give hope to patients with recurrent cancers,” Kobayashi said. “We are determined to spread the approach as an effective treatment to cure the disease.”

The therapy uses a specific antibody chemically joined to a photoabsorber, a molecule that absorbs light of a specific wavelength in the near-infrared part of the spectrum.

Kobayashi developed the antibody-photoabsorber combination, or conjugate, so that it is activated by near-infrared light only when bound to its target molecule.

A start-up contracted with the NIH has been conducting the first clinical trial of NIR-PIT in the United States since 2015, involving eight patients with recurrent head and neck cancers. Their cancers returned despite surgery or chemotherapy.

The results showed that three are still alive more than a year after receiving the new therapy with no tumors detected.


A Dying Plea

Young Men Should Be Required to Get the HPV Vaccine. It Would Have Saved Me From Cancer.

The cancer that’s killing me could have been prevented with just a shot.


At the age of 47, I was diagnosed with Stage IV oral squamous cell carcinoma.

More simply, I have advanced cancer of the head and neck. While initial treatment with grueling chemo-radiation appeared successful, the cancer returned one year later in both of my lungs. My prognosis shifted from potentially curable to terminal disease. The news was shocking and devastating—not just for me, but for my wife, two teenage daughters, and the rest of our family and friends.

Suddenly, my life revolved around regular appointments for chemotherapy, radiation therapy, imaging procedures, and frequent checkups. I made seemingly endless, unscheduled hospital emergency room visits—including one trip to the intensive care unit—to address some of the more severe toxicities from treatment.

All told, I suffered from more than a dozen side effects related to treatment and/or cancer progression. Some are temporary; others permanent. These include anxiety, depression, distorted sense of taste, clots forming in my blood vessels, dry mouth, weight loss, and many more.

My cancer started with a human papillomavirus (HPV) infection, a virus that is preventable with vaccines available for adolescent girls since 2006 and boys starting in 2011. The Food and Drug Administration (FDA) has approved three vaccines to prevent HPV infection: Gardasil®, Gardasil® 9, and Cervarix®.

These vaccines provide strong protection against new HPV infections for young women through age 26, and young men through age 21, but they are not effective at treating established HPV infections. It was too late for me in 2011 when the HPV vaccine was made available to young men, and I was 43 years old.

Full story:

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Programme for Coping: Friendly Friday

Gypzee Kerry, a kind and wise person, joined our group recently after having treatment for head and neck cancer. Kerry has worked in the field of drug and alcohol rehab and has some advice on how to recover after setbacks in life. I grabbed this from the Facebook page with Kerry's permission. 

A programme or guidelines I try to work by for recovering ......

A balanced lifestyle …

A helping hand.. easy to remember as each part can be counted on our thumb and fingers... 5 in total

Time for self

Music...reading ... hobbies ... exercise ... sport ... dance ... walks ... nature ... gardening ... mowing lawns ... journalling ... poetry ... self reflection etc

Time for others

Family ... friends ... social...relationship ... communication ... fun gatherings ... outings.

Time for work

Employment ... housework ...jobs etc.

Time for rest

Sleep... naps ... quiet time.

Time for spirituality

Nature ... God ... meditation ... prayer ... gratitude list...

Time for food

Feeding the body feeds the soul...Fluids stay hydrated essential to healing and well-being.

I love life ... as it is a blessing to be here ... and it works if I work at it ... here and now ...

I don't have to work hard just show up each day and be mindful of how I go

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How we started a support network

How did @HeadNeckNZ, also known as HNCSSN begin? Seems like a simple question to answer but it’s not. What occurred was a step by step process, a meeting of minds, a cluster of events.

Here are some key dates

2015 September. ACH support group member suggests we brand ourselves, become a charity and have an online presence.

2015 October. Temporary website on blogger.com.

2016 March. First AGM and committee. Take over running of Auckland group from ACH.

2016 June. We become an incorporated society, Head and Neck Cancer Survivors’ Support Network.

2016 July. First WHNCD. Publish stories on Stuff and Scoop

2016 August Start closed FB group: Head & Neck Cancer Support

2016 October Major GaL drive. Open our Ning website with a forum, groups, info and blog

2017 May 2nd AGM New committee member rebrands us with burgundy tui across all platforms and publicity material.

2017 May We begin our role as patient advocates in the Auckland Review of Head and Neck Services.

2017 July WHNCD stall at NSH. Videoed for our contacts around the world

2017 November 131 website members, 243 close Facebook group members. 

FUTURE: become a charity when have enough officers to step up.


We became an incorporated society in June 2016 after steady month to month progress after the idea was first mentioned by Kevin Bowers in September 2015.

Kevin, Diana Ayling and I were relatively new members of the Auckland HNC Support Group run for decades by a speech language therapist and social worker from ORL. Meetings were held once a month in Domain Lodge over the road from the hospital. When Jeannette and Susan retired in 2014, a clinical nurse specialist took over. Noelle and the patient/carer group wanted to reach out across the country to other head and neck cancer people.

Kevin had a business background and named and provided a logo for the group. Diana, with her legal/business/teaching background was also keen to fulfil Kevin’s dream of a formal, patient run organisation. I had some writing and editing experience, had started writing newsletters for the group in 2014 and became the editor.

From September 2015 to June 2016, Diana worked on producing the documents for incorporation. We had to have aim and goals, a strategic plan and a committee. We added our first out of town committee member, Tammy von Keisenberg, who is a great advocate for head and neckers.

We started a temporary website on Blogger.com and joined Twitter and LinkedIn.

We were fortunate to have connections to a large number of patients who had been treated in Auckland and who were on the original email database for the newsletters. This became the core of our network.

As time went on, Kevin left the groundwork to Diana and Maureen, who were not working at the time, and who began to organise the Domain Lodge meetings and reach out to related people and organisations within Auckland,

We were given a stock of stoma covers to sell by the Cancer Society. Diana contacted clinical directors of ENT in the wider area.

When she met Dr David Grayson of Waitemata District Health Board, a great relationship was developed between his innovative department and head and neckers. He was very interested in the patient voice, digital health and social media. Through David, Diana and I were able to attend a meeting with the Mayo Clinic Social Media people and meet e-Patient Dave of patient advocacy fame. He set up a stall at NSH for WHNCD 2017 and ran it with us.

A major turning point was the creation of a closed Facebook Group in August 2016. We thought it - together with Blogger - would fill in until we got our new website up and running but these days Facebook groups seem more popular than website forums for cancer patients and carers. We thank Adam Love for insisting we get on Facebook - and it worked.

Not only do we have members from Invercargill to Northland, but we have overseas members too, some of them very close - just across the Tasman.

We established a connection to an educational head and neck organisation in Australia called Beyond Five. Our meetings - in any part of New Zealand - are now advertised on their website.

Another turning point was WHNCD in 2016 - we carried out a media blitz, the most successful part of which was publishing Adam’s story on the Stuff website. That had people flooding into our FB group.

October 27th 2016 was another big day for us with the opening of our website. We had fundraised hard to afford a Ning site which enabled us to have groups, a forum and as well as information and a blog. It was slow to get going and needed lots of injections of new life but now it is healthy and functioning well. The discussion however, takes place on our FB group.

A watershed moment was when Olwen Williams joined our FB group and later, after her partner Fred who had head and neck cancer died, joined the committee. Her skills in graphic design and her technology skills have allowed us to brand ourselves in a professional way, especially on Twitter where we have made valuable contacts

We have a committee of 6 people from across the country as well as a small group of medical folk as advisory members.

The network is thriving now. We are understaffed but the connections we have made to health professionals, fellow patients and carers are invaluable. We treasure every patient, every doctor, every carer, every nurse, every medical worker with whom we are connected. Together we are stronger.

We thank Kevin for his initial idea.

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Post treatment problems? Weds Weekly

Wednesday Weekly is a collection of recent stories about head and neck cancer from Google Alert, compiled and introduced by one of our members. 

Couple of stories this week about life after diagnosis and treatment – even if successful it’s not all roses.

Lead story suggests there’s a good chance of mental decline two years after chemotherapy or radiotherapy - however I’m not convinced treatment is directly responsible. Stress, reduced stimulation from social or employment activity and so on could well be major contributors.

The second story is along similar lines, but suggests some remedies, it’s a long story and worth a look in full.


# If humans didn't exist there would be no one on earth to appreciate how cute otters are

# Given recent events, it might be a good time to permanently retire “Baby, It’s Cold Outside” from holiday playlists.

# How do you tell if blue cheese has gone off?


Long-term neurocognitive problems a concern for head and neck can.er survivors

(Canada) Head and neck cancer survivors are at risk for delayed neurocognitive deficits (NCD) for at least 2 years after radiotherapy or chemotherapy, according to a prospective longitudinal study.

The study assessed neurocognitive function and self-reported symptoms in 80 patients with head and neck cancer requiring definitive chemoradiotherapy or radiotherapy and 40 healthy controls. Significant differences were found between the performance of patients and controls in several domains, with patient deficits increasing over time.

“[F]indings indicate that neurocognitive function, although not immediately affected after treatment, progressively declines in the 2 years after definitive treatment with chemotherapy or radiation,” write Lori Bernstein (Princess Margaret Cancer Centre & University of Toronto, Ontario, Canada).

The researchers conducted a 90-minute neurocognitive test .

Overall, patients showed declines in global cognitive function, intellectual capacity, concentration/short-term attention span, verbal memory, executive function, and motor dexterity at 6, 12, and 24 months. However, patients and controls performed equally well in processing speed and visual memory.

The researchers “noticed no consistent pattern to suggest reliable risk between receiving any particular chemotherapy regimen or radiation dose and having greater NCD.”

Nonetheless, they conclude, “Strategies to reduce toxic effects and cognitive rehabilitation options should be available for [head and neck cancer] survivors.”

Full story:


Why the trauma of cancer doesn’t end after treatment

(U.K.) When you think of cancer recovery, chances are you think of someone bouncing back into great shape and health. After all, you’d assume that the worst would be over. But surviving doesn’t always mean living well.

A recent report found that the health and social care system fails to support many recovering cancer patients with the ‘significant physical and emotional trauma’ the illness leaves behind.

It warned that many people felt like they had ‘fallen off a cliff and don’t know what to expect or where to turn to for help’. The report found that over 80% of cancer patients who reported physical difficulties in the two years after treatment said they lacked full support to get their lives back on track.

Key statistics from The online survey of 2,067 people living with cancer in the UK. 34% are still struggling with their physical wellbeing up to two years after treatment ends. 30% who have completed treatment in the last two years say their emotional wellbeing is still affected. 40% who have finished treatment in the last two years are living with moderate or extreme pain or discomfort. 80% of people facing physical difficulties in the two years after treatment say they have not been fully supported to get their life back on track

What should people with cancer know about recovery? It’s easy to get caught up thinking that this is the end but there’s lots cancer survivors can do post treatment, says Dany Bell, Macmillan Cancer Support’s specialist advisor on Treatment and Recovery.

Understand what you can do to help yourself through physical activity – even if that’s increasing the amount of walking.

Know where you can manage anxiety. It doesn’t necessarily have to be face-to-face. You can download a mindfulness app and work through it.

Everybody is different and different things will work for different people You may run into problems even two years down the line with fatigue or anxiety about cancer coming back.

People need to know that’s okay and normal.

Full story:


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I’m in favour of patient attendance at the multidisciplinary meeting. The first time I attended one in October 2009, I felt quite humbled by the experience and got a secret thrill out of being the centre of attention. Wow, so many medical people looking at me and wanting to make me better.

Last time, though, in 2014, it was a more daunting experience. I had a recurrence and the meeting room seemed to have been turned into a theatre with me alone on the stage. I still think it was of benefit for a multitude of specialists to see me and my tumour but it could have been a lot more patient friendly.

Some question the need for the patient to be there. My story is not about that but about how I could have been a more switched on patient and how the hospital could have enabled that. I'm grateful for my life and the expertise that has kept me alive after four cancer diagnoses but my job now is to be a patient advocate. I'm all for participatory medicine where patients work with health professionals. 

I wrote about being an e-Patient last week, concentrating on the time of diagnosis. 


What are some of the things that stick in my memory about the MDM?

  • There was a lot of waiting and we couldn’t leave to get lunch downstairs because the doctors might be back anytime. We were given a packed lunch. There was an apple. Apple! Head and neckers can’t eat apples!
  • People were very respectful, asking permission to inspect my mouth. 
  • It was discreet. I didn't see any other patients. 
  • I saw my surgeon briefly before my turn to go into the meeting. In the corridor as we approached the meeting room he told me my CT scan showed two small round lymph nodes. Small is good and round is bad, I found out later. I had had no idea my scan showed any hint of a spread until that moment. 
  • I was probably scoped so that the doctors could see my lesion on a screen but I have no memory of the procedure.
  • They argued about my case. The biopsy (showing an early cancer) was wrong some said. Someone felt it. “It’s lumpy,” he said.
  • A dentist wiggled the tooth near the lesion, “It’s loose.”My heart sank and I crossed my fingers.
  • My son was sitting in the front row. He put his head in his hands. A nurse patted him on the back. 
  • Afterwards the surgeon skedaddled as fast as he could but he did tell me that it would “not be as bad as last time.” When pushed he said he didn’t think the cancer had spread to my nodes. 
  • My son and I were left in the room to wait for a registrar who booked me in for surgery. It was going to be over a month away. He looked sad. 
  • A nurse had pushed a brochure about the “marginal mandibulectomy” in my direction. I pushed it back. I wasn’t having my mandible cut, I thought. 
  • The registrar, when he came in, told me that yes, a shaving would be taken off my lower jaw. 
  • I was calm. It was a shock to hear how big the surgery would be but I’d done my grieving about the recurrence prior to this meeting.

So, I had gone to the meeting thinking it was a serious situation because the cancer had recurred,  but that it was only a very early tiny cancer.

I came out knowing that I would have the tumour cut out plus all the teeth removed on that side and a thin scraping of jaw. I would have a neck dissection of course and the cancer had possibly spread to the lymph nodes this time. And I had to wait another month or so to have all this done.

I tried to be an active and engaged patient but there wasn’t much chance of that. But here are some suggestions as to what could have been done better.

  • Don’t have the patient alone on the stage?
  • Prepare the patient for the meeting with written material but also by someone talking to the patient beforehand. Not a rushed consultation with a busy surgeon. Email contact? 
  • Inform the patient of relevant test results before the meeting.
  • Either avoid arguing in front of the patient OR go the whole hog and include the patient in the discussion afterwards about health status and treatment decisions. (For patients who want that)
  • Ensure a timely procedure for the patient to be debriefed after the meeting.
  • Written material is good but needs to be combined with some spoken communication too.
  • Tell the patient of any follow up appointments to explain more about the surgery. Make a more leisurely appointment for later.

I know what a delicate balancing act it is for the hospital to organise 10 patients and 20 health professionals to be together all on the same morning. But, phew, from a patient’s point of view it can be brutal.

A good thing was that a surgeon called me back after a week or so to explain the surgery in more detail. I appreciated that although I was horrified when he said he’d have to cut my chin open to access the tumour. “We have to get a drill in there,” he said.

When I look back on this MDM, I don’t think I was such a shrinking violet as I’d been during the diagnostic procedure but my son and I were put through the MDM and its aftermath like lambs to the slaughter with no input, no time to ask questions. Everyone else had the expertise and we had to sit there and take it. That seems fair in the old paternalistic model of medicine. My life was saved.

But in the participatory model of medical care, things would be different. My lymph node status was never explained to me and the consequences were severe. My facial nerve was cut to get to nodes through scar tissue - nodes that didn’t have cancer in them anyway. Someone made a decision to take this risk and I was never told of it or even informed later about the lifelong consequences of having a paralysed lip.

Here is a link to a fascinating Mayo Clinic paper about patients being held hostage by the expertise of the medical staff so that they become helpless and disempowered. Maybe it’s a bit extreme and I believe in a measured approach. But there are some good points here. 


To conclude, patient-centred care is all the rage now but as one of our members said, it doesn’t just mean putting a patient on a stage in the center of the room.

Conclusion 2: I know my local hospital is working all out to make the MDM a better experience for the patient. 

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Is it nature or nurture that determines our fate? Is it our genes that make us who we are or our environment? According to some of the speakers at this symposium, we are not fully responsible for many of our behaviours. Our bodies and minds are affected by genes, hormones and bugs. Nature is what makes us.

Molecular Biodiscovery is what the Maurice Wilkins Centre is all about. It’s a research centre looking at cancer research, diabetes and molecular disease, infectious disease and integrative technologies.


Diana and I were invited to this symposium at the Old Government House as CEOs of a charity! The event was on 21 November and was meant to feature Dr Lance O’Sullivan and someone talking about targeted therapy but they could not attend so two visiting professors from Otago University offered their time instead.

Only one of the following stories relates to head and neck cancer but they are to do with health and the often thankless work carried out by underfunded research institutes across the country. We need to support them.

The venerable old house, by the way, was built in about 1856, has a resident gray cat called Governor Gray and a pleasant old fashioned rose garden.

I’ve written a brief summary here. Each speaker had a favourite type of organism/hormone/cell etc so I’ve taken the liberty of concentrating on those:

  • leptin (keeps us slim)
  • prolactin (helps us feed and care for kids)
  • the gut microbiome (good bugs and bad)
  • T-cells - can be engineered to kill cancer

I don’t have a science background so I may have made some errors. Feel free to comment.

Leptin: Professor Tony Merriman, Otago

Professor Tony Merriman is a genetics expert from Otago University. Our genes don’t simply give us obvious things like our height but also contribute to our weight and our propensity to get diseases like gout and diabetes. Instead of blame, we need to look at a more biomedical approach to disease, he says.

Obesity, he says is genetic. It’s biologically driven, not a “choice” thing.

He showed us a story about a obese baby with a rare genetic mutation, probably a leptin mutation.

Leptin is “the hormone of energy expenditure”, made by adipose cells that helps to regulate energy balance by inhibiting hunger. (Wikipedia)

They have done experiments with mice. If a mouse has a leptin mutation, it never knows when it’s full. When given leptin injections its condition is fixed.

Leptin resistance is similar to insulin resistance with diabetes.

You can look up your genetic disposition using this website but so far it is not a very robust test and is mostly valuable for ancestry etc. (He gave a test to his wife for her birthday. She wasn’t best pleased.)

https://www.23andme.com/ (We 23 pairs of chromosomes)

There is so much new research into genes that Wikipedia is way behind.

Similarly, conditions like gout which are often blamed on behaviour, are greatly increased by a genetic factor. The ABCC2 genre is quite common in Maori and Pacific Island males and predisposes them to gout.

As for diabetic treatment, we are still in the dark ages. We can prevent type 2 diabetes with bariatric surgery which at only $9000 is cheap and safe. But we do very few. (I think Professor Shepherd who ran the symposium made this comment.)

Prolactin: Professor Dave Grattan, Otago

Our body weight is usually automatically maintained although it goes up bit by bit as we age. Our fat tissues (leptin) tell us what energy we have stored and our brain adjusts to compensate. A stable state is called homeostasis.

But when we are pregnant that balance is upset because a hormone called prolactin makes animals like us smash the leptin receptors.

We monitor our weight differently during pregnancy. Weddell seals’ milk is 60% fat so they have to put on a lot of weight during pregnancy. Lactation will require energy so pregnancy hormones override the homeostatic feedback.

In conclusion, our body weight is somewhat affected by hormones in the body, not just by what we desire to eat.

(Prolactin could also be called the parenting hormone. Fathers might have high levels of prolactin. The wider whanau of baby monkeys will have high prolactin!)

The microbiome of the gut: Dr Xochitl Morgan , Otago

This is a fascinating topic, only some of which I understand. The microbiome consists of bacteria, viruses and other single celled organisms = bugs

  • We have 10 trillion bacteria in our bodies
  • We have 7.5 million genes in our bugs
  • 1 human genome has only about 20,000 genes

Bacteria can do more than us. They can modify drugs, affect the brain and metabolism.

When we digest fibre we have only 9 enzymes to break it up so the gut microbiome are much better at this,

Some bugs protect us from disease but it you kill all the bugs with broad spectrum antibiotics, you kill the good bugs too.

An example of microbiome treatment is using faecal implants to cure C-Diff. (clostridium difficile). That means replacing the good bugs. Restoring function.


Here is an explanation from WebMD

“You take antibiotics to knock out a bacterial infection. But for some people, these drugs can trigger a potentially life-threatening infection caused by a type of bacteria called clostridium difficile, or C. diff. It can cause colitis, a serious inflammation of the colon.”

Probiotics and prebiotics as they are marketed are not the results of an exact science. You don’t need these if you are healthy.

But you do need a proper balance of microbiomes to make your immune system work. Antibiotics can tap the reserve.

T-cells: Professor Rod Dunbar, Auckland University

Rod talked to us about immunotherapy. We probably already know that Pharmac has approved Keytruda and Opdivo, two immunotherapy drugs which can cure some melanoma patients and are showing some promise with head and neck cancer overseas.

Immunotherapy is the hope for the future because it can help our own immune system recognise and combat the cancer. He showed as a video of little wriggly T-cells (the rock stars of the immune system?) going in to take on cancer cells and exploding them. Trouble is, nature has not provided T-cells with the weaponry to tackle cancer cells so researchers have to find ways to weaponise T-cells.

There is also a method called CAR -T which the Maurice Wilkins Centre is taking to trial at the Malaghan Institute in Wellington.

What is CAR-T?

Chimeric antigen receptor. Chimeric antigen receptors (CARs, also known as chimeric immunoreceptors, chimeric T cell receptors, artificial T cell receptors or CAR-T) are engineered receptors which graft an arbitrary specificity onto an immune effector cell (T cell).

A CAR-T empowered cell can only see the outside of cancer cells so will be limited in use but effective for some. Not many cancer cells have targets on the outside.

This was a very interesting talk and quite easy to understand but I have to confess I can’t understand my notes so this is only a brief summary. Fortunately we managed to track Rod down after the lecture to invite him to speak to our Auckland group next year.

In conclusion
It was an interesting series of lectures. At one stage an audience member argued for a sugar tax which she said had worked in Mexico. No, said Professor Shepherd. It won’t work. Certain sectors of society will still drink soft drinks and still smoke despite the expense and that just harms their children. Addiction is in the genes and needs to be treated accordingly. When prices go up rich white people change their behaviour but it doesn’t work for all.

Hmmm. Can’t we have both? A sugar tax and a biomedical approach?

And finally an old-fashioned rose from the Govt House garden. Maybe it needs some genetic engineering? 

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