Support Network Newsletter Volume1, No. 8 July 7, 2016
This month’s talks
We had two excellent speakers this month. Scientist Dr Francis Hunter talked about cancer research while dietitian Lisa Guest led an animated discussion on food and feeding.
Precision treatment offers new hope
“… unlike Beowulf at the hall of Hrothgar, we have not slain our enemy, the cancer cell, or figuratively torn the limbs from his body. In our adventures, we have only seen our monster more clearly and described his scales and fangs in new ways - ways that reveal a cancer cell to be, like Grendel, a distorted version of our normal selves.” Nobel prize winner 1989, Harold Varmus
Cancer is different in every patient just like their fingerprints, says Francis Hunter. Some people have a complete response to traditional treatments and some don’t.
Dr Hunter, a research scientist at the Auckland Cancer Society Research Centre, is adamant that more targeted treatments are needed for cancer patients. He calls it “precision medicine” and his team is currently operating a $6 – 7 million research programme looking at personalized treatment for head and neck cancer patients.
The centre has 85 staff and 20 students and their mission (for a number of cancers) is to develop more drugs with a focus on precision. They also want to learn how to use existing treatments better. Radiotherapy, for example, is an important treatment used with curative intent in head and neck cancer. They are working closely with radiation oncologists like Andrew McCann to improve the effectiveness of radiotherapy.
Tumour hypoxia is an important focus of their research. Hypoxia is just a big word for lack of oxygen. Because tumours are chaotic, some parts of them have messed-up blood vessels and hence lower oxygen. Hypoxia is associated with radiotherapy failure in head and neck cancer. Francis showed us a graph (Kaplan-Meier Curve) which illustrates how cancer patients with less hypoxic tumours survive better after radiotherapy. Hypoxia (low oxygen) bad; less hypoxia (more oxygen) good. Why is this? Radiotherapy interacts with the DNA in our cells. RT is toxic to tumour cells when oxygen is there. When oxygen is not there, radiotherapy is approximately 3-times less effective.
So hypoxia is a target for researchers. It drives tumour progression and is an important contributor to RT resistance. It can also contribute to resistance to chemo and lead to poor surgery results.
Another aspect of hypoxia-targeting is the creation of prodrugs which do not switch on until they reach their target, the area of hypoxia in the tumour. Francis explained that they are switched off like a gun with the safety lock on, until they reach their destination in the body. It’s quite magical because they can be activated by enzymes called reductases. The presence of oxygen can turn them off.
While diagnosis by histology (e.g., taking a biopsy) is still important, diagnosis by looking at gene mutations is going to add great value in the future and is already important in treating tumours like lung and breast cancer.
The cancer genome means “all the genes in a cancer”. Gene mutations cause cancer with a mutation much like a typo where we hit T instead of A. Targeted therapy is being used in breast cancer where the HER2 gene is affected and Herceptin has proven to be a useful drug.
There have been huge increases in scientists’ ability to sequence a genome and find the mutations that can be targeted. The cost is going down faster than exponentially. It used to cost 100 million dollars but can now be done for $1000.
Another exciting new development is a gene editing tool called CRISPR-Cas9 that uses “molecular scissors” to cut into DNA and modify its function (switching it on or off with very high precision).
Finally, this research is a collaborative effort. Two important institutions they work with are Peter Mac Cancer Centre in Melbourne and the Princes Margaret Centre in Toronto.
No, they haven’t found a cure for cancer yet, but Francis sees this new direction in cancer treatment with targeted therapy, immunotherapy and tapping into the cancer genome as groundbreaking. Cancer research in 2016 could be likened to an historical turning point like Galileo presenting his telescope to Leonardo Donato. And cancer cure rates have improved greatly.
1970: 24 % 10-year survival;
2010: 50 % 10-year survival; goal within 20 years: 75% 10-year survival.
Researchers are obviously getting more closely acquainted with the scales and fangs of the monster.
Thank you very much for speaking to us Francis. We look forward to a guided tour of the centre sometime down the track.
For more on Francis’ research, go to this link: https://unidirectory.auckland.ac.nz/profile/f-hunter
Protein, Smoothies and Superfoods
Auckland Hospital dietician Lisa Guest discussed these popular dietary issues with us. Then we added some more as the discussion continued.
Protein
How much protein do we need? We should have .8 to 1 gram of protein per kilogram of body weight. If we are getting over surgery, our need goes up to 1.4 grams per kilogram. We need this extra protein for six months to a year.
To get 30 grams of protein, we can eat six oysters, 3 oz of chicken breast, four hard-boiled eggs, three cups of whole milk or four oz of salmon (100 gms). We need to eat this amount two to three times a day.
Vegetarian sources of proteins like beans and pulses are good but don’t contain the full amount of amino acids. You can achieve this by eating them with whole grain bread.
Protein powders are expensive. They cost $1.00 - 2.30 per portion while milk powder is a cheaper source of protein at $6.99 a kilo or 4 cents a portion.
Smoothies
The Macmillan website (www.macmillan.org.nz) has some good information. Blenders on the website www.priceme.co.nz cost $30 - $1500. One member of the group recommended the 900 W Nutribullet which at $129 has been a lifesaver. It’s robust and relatively quiet.
Superfoods
Lisa recommends eating simple foods in season rather than the expensive superfoods. Don’t forget the humble brussel sprout. No one food is going to contain all the answers.
Coconut oil has lots of benefits but is a saturated fat so not very heart friendly.
Different milks like goat’s milk and buffalo milk might suit some people because the fat profiles are slightly different. She is sceptical about the latest non-dairy milks like rice milk.
Tube Feeding
There was considerable interest in this within the group. In the hospital only prescribed feeds are put through the tube.There’s a safety aspect and the known factor of six Fortisips a day providing an adequate diet. In the UK there is a move towards putting blended food in tubes.
Nurse Val is a useful person to ask for advice when you have check-ups. You can email Lisa or can be referred to a local dietitian.
Feeding after surgery
Fortisip and Ensure are used. The milk sugar or lactose is removed from these products but they can combine with antibiotics to upset the gut. If people have severe problems they can use a soya-based feed and anti-diarrhoea medications can be used.
Thank you very much for giving us your time, Lisa. Food is probably a major issue for most of us.
How much protein do we need? We should have .8 to 1 gram of protein per kilogram of body weight. If we are getting over surgery, our need goes up to 1.4 grams per kilogram. We need this extra protein for six months to a year. Lisa recommends eating simple foods in season rather than the expensive superfoods. Don’t forget the humble brussel sprout. No one food is going to contain all the answers. Different milks like goat’s milk and buffalo milk might suit some people because the fat profiles are slightly different. She is sceptical about the latest non-dairy milks like rice milk.
New specialist nursing team
Our specialist nurse here at Auckland City Hospital, Vicki Thompson, introduced us to her new colleague, Malveena Kumar. While Malveena has replaced Noelle Farrell, she is not stepping into Noelle’s shoes as a patient navigator. Instead they have split the roles between them equally. Vicki will look after the patients belonging to one group of surgeons and Malveena will look after the other half. We look forward to working with Vicki and Malveena.
Find us on Givealittle
We have started to fundraise! Givealittle is up and running and already attracting a trickle of donations. You can find it at the link below:
Our fundraising supports our publications, posters, flyers and website subscription.
Vote for your Twitter handle!
We have considered a range of ideas for our Twitter handle. And we think you would be best people to decide the right one. Click this link to vote. http://poll.fm/5mwok
Order Stoma Covers from Us!
We have taken over sales of stoma covers from the Cancer Society. You can now order from us. We have a range of colours and weaves available. 
You can access the link at any time from our website http://headandnecknetwork.blogspot.co.nz/ or email us at headandneck@gmail.com
Our Facebook Group
We have started a closed group on Facebook. If you are a member of Facebook, you can find the group here
or search for Head & Neck Cancer Support. A big welcome to all the people who have joined. We are delighted with the response.
Patient Stories
Unfortunately, we have no patient stories this month so here are some accounts of well-known people who’ve had head and neck cancer.
Sigmund Freud (1856 – 1939)
Sigmund Freud, a pioneering figure in the study of the human mind, was the founder of psychoanalysis. In spite of his knowledge of psychology, he couldn’t deal with his own addiction to cigars, smoking up to 20 a day from his mid-twenties until his death at 83 in 1939.
His head and neck cancer started with a painful swelling in his palate which he ignored from 1917 until 1923 when he was diagnosed with squamous cell carcinoma. He had long suspected it to be cancer, calling his lump, “my dear neoplasm”. When he went to his doctor, he said, “I am going to show you something you won’t like.”
His first surgery in Vienna was unsuccessful but eventually he came under the care of Professor Hans Pichler, an outstanding maxillofacial surgeon who carried out most of the 33 surgeries Freud endured in both Vienna and London.
An interesting thing about his diagnosis is that his doctor didn’t tell him it was cancer at first, trying to protect Freud’s feelings. Dr Felix Deutsch told him it was just a bad case of leukoplakia caused by smoking. Freud was said to be angry about this later because he believed that Deutsch had underestimated his strength.
His cancer spread to his jaw which made a maxillectomy necessary and he had to wear an obdurator, a prosthesis made to keep his oral and nasal cavities separated. Freud named the device “the monster” and described it as “the very model of a necessary evil”. He also had radiotherapy and developed trismus. Below is a quotation from Pichler’s case notes.
“A partial maxillary resection was performed. Covering of the wound surfaces was carried out using the split skin graft technique published in 1917 by Esser (1877– 1976), and by the insertion of a provisional obdurator prosthesis. On the evening of the operation, Freud enjoyed two Havana cigars.”
In spite of ongoing problems, there was no real recurrence of his cancer until 1936. His last year of life was miserable but Hans Pichler had kept him alive for 16 years, enabling him to continue studying, writing, publishing and receiving patients. Two months before his death, he was still seeing four patients.
Neville Crichton, (1945 -)
Sigmund Freud, a pioneering figure in the study of the human mind, was the founder of psychoanalysis. In spite of his knowledge of psychology, he couldn’t deal with his own addiction to cigars, smoking up to 20 a day from his mid-twenties until his death at 83 in 1939.
This is the story of a hugely successful New Zealander who contracted head and neck cancer at a young age, had a laryngectomy, but went on to become one of Australasia's richest men through his car dealership and yachting success. The following extract is from Wikipedia and boating magazine articles.
Neville Crichton, is a New Zealand businessman who was also a competitor in Australasian motor and yacht racing. Born in New Zealand in 1945, Crichton left school aged 14 and entered the automotive industry. In 1972 opened a used car dealership
In 1978 he was diagnosed with throat cancer. By 1981, he had endured a succession of operations, but the disease had progressed to the point where doctors gave him three months to live. Crichton, however, had other plans. “I never accepted I was sick. In fact, I have never been sick in my life. I just happened to get throat cancer.”
The outcome was the removal of his voice box and a new way of speaking through a hole in his throat. The distinctive sound has earned him the nickname “Croaky”, which he wears with good humour. Crichton declares. "‘I never let it get at me until I couldn'’t talk and then that was a major problem, because I’'m a dealer and without talking you can'’t deal. “
"‘I read about these doctors in Indianapolis,"’ he explains, "‘who had developed this method of talking, but didn’'t have a guinea pig to prove it. I went over there and worked with them –- we really got the valve working and I was able to talk again.’"
Crichton was kicked in the throat playing rugby when he was younger, and had to be ventilated via a tube down the throat. It was damage from this procedure that he has been offered as an explanation for the disease.
‘"Throat cancer is really related to cigarette smoking and I’'ve never smoked a cigarette in my life –probably done every other bad thing, but never had a cigarette.”
After the cancer, Crichton got back into yachting. He skippered the 30m superyacht, Alfa Romeo, to victory in the 2010 Sydney to Hobart race and has a long list of other wins to his name. Yachting can be a dangerous sport but it's particularly treacherous for Crichton. If he fell overboard he would die, as water would pour in through the hole in his throat.
Early Detection Saves Lives
One of our aims is to advocate for better treatment and care. Under this heading we can encourage early detection of head and neck cancer. Some of us had a struggle to get diagnosed because we and our GPs did not pick up the early warning signs. It would be gratifying to be able to spread the word to society at large that head and neck cancer is curable if caught early. Early treatment can also prevent the need for invasive surgery and damaging radiation.
Here is a list of early warning signs
A lump in the neck
Cancers that begin in the head or neck usually spread to lymph nodes in the neck before they spread elsewhere. A lump in the neck that lasts more than two weeks should be seen by a physician as soon as possible. Of course, not all lumps are cancer. But a lump (or lumps) in the neck can be the first sign of cancer of the mouth, throat, voicebox (larynx), thyroid gland, or of certain lymphomas and blood cancers. Such lumps are generally painless and continue to enlarge steadily.
Change in the voice
Most cancers in the larynx cause some changes in voice. An otolaryngologist can examine your vocal cords easily and painlessly. While most voice changes are not caused by cancer, you shouldn’t take chances. If you are hoarse or notice voice changes for more than two weeks, see your doctor.
A growth in the mouth
Most cancers of the mouth or tongue cause a sore or swelling that doesn’t go away. These may be painless, which can be misleading. Bleeding may occur, but often not until late in the disease. If an ulcer or swelling is accompanied by lumps in the neck, you should be concerned. In addition, any sore or swelling in the mouth that does not go away after a week should be evaluated by a physician.
Bringing up blood
This is often caused by something other than cancer. However, tumors in the nose, mouth, throat, or lungs can cause bleeding. If blood appears in your saliva or phlegm for more than a few days, you should see your physician.
Swallowing problems
Cancer of the throat or oesophagus may make swallowing solid foods— and sometimes liquids —difficult. The food may “stick” at a certain point and then either go through to the stomach or come back up. If you have trouble almost every time you try to swallow something, you should be examined by a physician.
Persistent earache
Constant pain in or around the ear when you swallow can be a sign of infection or tumor growth in the throat. This is particularly serious if it is associated with difficulty in swallowing, hoarseness, or a lump in the neck. These symptoms should be evaluated by an otolaryngologist.
NB. Some of us experienced unexplained tooth pain as a first sign of cancer.
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From the Chair
This month was another one of great achievement for Head and Neckers. We were formally incorporated by the Registrar of Incorporated Societies.
We opened our bank account with Kiwibank. Maureen and I were so impressed with the service. We highly recommend the bank to you. We so impressed the bank advisor that he donated $30.00 to our account. Thank you Daniel Pilli, Britomart Branch. You are our first official donor.
We have our Givealittle Page up and running. We have not yet attained charitable status but you can make a donation to the Network. We strongly encourage you to do so, as websites, brochures, posters, and postage all cost. We hope to run the Network at a budget of under $5,000 per year. However, we do need to raise that amount annually. We would like your ideas on how to uniquely fundraise each year. We might like to coincide with World Head and Neck Cancer Day which is held 27 July each year. I look forward to hearing your thoughts.
As winter digs in a number of our members were unwell over the last month. It is a time for us to check in with each other, and offer the care and support that Head and Neckers does so well.
Finally, I want to thank the committee for an outstanding achievement in completing not only a Strategic Plan for 2016-2021 but also completing an operational plan for 2016-7. The committee is truly talented and energetic team and I am appreciative of their commitment and ideas.
Diana Ayling
We opened our bank account with Kiwibank. Maureen and I were so impressed with the service. We highly recommend the bank to you. We so impressed the bank advisor that he donated $30.00 to our account. Thank you Daniel Pilli, Britomart Branch. You are our first official donor.Contact us
Email: headandnecknetwork@gmail.com
Temporary website: http://headandnecknetwork.blogspot.co.nz/
Telephone:
Diana: 09 948 204
Maureen: 09 426 1154
Our Auckland meeting place is Domain Lodge, 1 Boyle Crescent, Grafton, Auckland, 09 308 0161
Maureen: 09 426 1154
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