5 November 2015, Vol. 1, No. 4

In this edition:

• From the Editor - Maureen Jansen 
• Speaker Kim Gear 
• Research into mucositis 
• Laryngectomy Study 
• Head and Neckers Meeting: Our new direction 
• Patient Story: Alison Hobbs 
• Head and Neck Cancer in the News 
• Have our say about health strategy 

From the Editor - Maureen Jansen

This month was the most dynamic for Head and Neckers. We opened our temporary website, and posted our first newsletter online.

Thirty people were present at this months meeting. There were some new faces and medical professionals. Welcome to all the new attendees.

The reason for the steep increase in attendance was the topic: oral health. This is a burning issue for most of us. Some new people were present because our group is now publicised. More health professionals are keen to address us. It is gratifying to see that our message has spread. The more people who attend, the louder our voice will be.

November Meeting

Present: Maureen, Earl, Alan, Marlene, Michael Hearn , Alison, Gwyneth, Kevin, Diana, Heather, Trevor, Chris, Gaye, Mike, Judy, Dave Clark, Jill, David, Warren, Amy, Carleen, Tess, Merle, Ken, Graham, Mac, Amy, Jenny, Kenny, Annie.

Speaker Kim Gear

Dr Kim Gear from Oral Health gave a interesting talk which sparked some animated discussion. Below is a summary of her points and the issues raised by patients.
Radiotherapy, Kim said, has long term effects and we need to do what we can to minimise them. The Head and Neck Support Network has “huge momentum” now. We need to work together in a coordinated manner to secure long term dental treatment post radiotherapy.

Kim's Tips:
The tooth is like a house
The tooth is like a house with enamel on the outside, dentine beneath it and the nerve in the centre. A breach in the wall of the house allows bad bugs to infiltrate. Once they are in the dentine they are harder to control. RT makes things worse so the aim is to avoid the breach. How do we do that?

• Identify susceptible teeth before treatment
• Focus on good bugs not bad
• Take care with sugars in the diet
• Take care with what and when we eat

Importance of saliva
Saliva has many aspects. One of them is for storage. Teeth are like bricks stored in saliva. There is a rebuilding process going on all the time. If you put a tooth in a glass of coke it will dissolve but in the mouth teeth are protected by saliva (normally). Saliva also protects from thrush and helps with eating and speaking.

Non-physical use of saliva
Saliva is so powerful that it has cleaning properties. Kim asked her children to donate some saliva. She used it to clean a discoloured kauri table that had been left outside. She compared the cleaning qualities of saliva with those of water and Mr Muscle. Saliva was clearly superior. Divers use saliva to defog their goggles.

Medications affect saliva
Some drugs can prevent neural transmission, i.e. the message to the brain to make saliva. The following meds are implicated in causing a dry mouth

• Antihypertension drugs
• Anxiolytics
• Antihistamines
• Anticholinergics
• Antipsychotics

These are called xerogenic drugs. They should be taken at night if possible so the teeth can be remineralised during the day. Some meds have sugar, for example Nilstat. Use other antifungals.

How to avoid dental decay

• Don’t graze, as dieticians often tell you during RT. Put meals together. If you eat sugar, eat with rest of meal.
• Careful oral hygiene. Brush twice a day at least with fluoride toothpaste. Neutrafluor 5000 is good but expensive. This is where we need to push for funding. 
• Floss daily. Flossing has been criticised in the news recently but she is a great advocate for flossing. You can also get little brushes to clean between the teeth
• Rinses are not all good. Some will just mask the problem. A strong fluoride mouthwash would be useful, as is chlorhexidine
• Salt and baking soda (50/50, one teaspoonful in a glass of warm water) is wonderful. Salt breaks down thick saliva and baking soda makes the mouth less acidic. 

pH level in the mouth
The pH level is a measure of how acidic the mouth is. This is very important because acid causes the breach in the wall of the tooth.

“The pH scale goes from 1 to 14. 1 being the most acidic, 14 being the most alkaline, and 7 being neutral (like most water). A pH of 5.5 is an important pH level for teeth as the teeth begin to dissolve or demineralize at a pH in the mouth below 5.5.”
(http://carifree.com/patient/learn/protective-factors/ph.html)
So pH 5.5 is when the building blocks come out to rebuild the teeth. Fluoride applied to the teeth get the level up to 4.5.

More Points

• Don’t drink filtered water because filters take out the fluoride
• Carbonated water is acidic – pH level way too low. Sip ordinary water
• Some toothpastes have a foaming agent called sodium laurel sulphate. This can sting. Sensodine Rapid Relief has no SLS but doesn’t have much fluoride. 
• Kim is trying to get a fluoride rinse made at the pharmacy at $3 a bottle. If we can have that we can use normal toothpaste.
• The Lancet diagram on next page shows the variables we can and can’t control to prevent decay.
• Diet needs to be palatable as well as nutritionally complete. Also practical for unwell patients. There is a book called Cooking Solutions by her predecessor David Hay. Next month she will bring photocopies for us.

Foodstuffs can be deceptive. For example fruit teas can be bad, with a pH of 3.
www.choice.com has info about acid in food. Tomato sauce, for example, is loaded with sugar.
After eating something sweet, wash your mouth with salt and baking soda. It will reduce the acid, but not take the mouth back to what is was.

Secret Weapons

• Electric toothbrush. Use child’s one if necessary
• Use only a soft toothbrush
• Flick brush up at 45 degree angle
• Most plaque is at base of tooth
• Clean across the tops and don’t forget the backs
• Adjuncts
• Savacol is the same as chlorhexidine
• Biotene products
• Alcohol free Periogard
• Use online products like Squigle – fluoride toothpaste with no foaming agent or
• flavour
• GC Mouth Gel

Discussion
I have summarised these matters brought up at the meeting:

1. So many people have long term complications and find it hard to find help. Kim provided us with an email address, one that she checks: oralmed@adhb.govt.nz
2. The radiation booklet given to patients has several informative pages on oral care after RT. Not everyone was given the book.
3. A personalised care plan is not given to patients at discharge from RT. Patients see various medical people and the goalposts are changed at each consultation.
4. Why aren’t we informed more about the implications of RT? If it were spelt out we might be more vigilant.
5. Could dentists in a geographical area, be designated to deal with head and neck cancer people?
6. We need to know the field of radiation so we can tell our dentists.
7. A member of the group, called Roger, tried a few years ago to lobby for head and neck patients. He didn’t get far. It boiled down to money in the end. 
8. Head and neck cancer is not a “glamorous” cancer. There are not the numbers of people affected to attract more funding. There’s also a stigma because HNC is often linked to drinking and smoking. It’s going to be hard to fix this.
9. Kim advocates sensible spending by the department. Patients would be better off having six monthly cleans at the dept. and fluoride rinses. Without support people have more complicated and expensive treatments like HBO. She doesn’t do business plans but they do have the ear of management at the moment.
10. The dept. can put fluoride on teeth every two months. Fluoride tabs are not effective because they do not cover the surface of teeth.
11. There is no funding for implants. They provide basic dentistry only. Later Kim said, "with regard to cosmetic dentistry, they make partial dentures and implant anchors". 
12. More involved implants are gold standard and these are determined on a case by case basis. They should be able to organise dentures for everyone that needs them. 
13. Oral Health now provides dental treatment for a year after radiotherapy. 
14. Kim thinks we should lobby for better provision of services. Outline complications we have faced and expenses we have borne.

Conclusion
Kim advises us NOT to have all teeth extracted out of frustration because this leads to more complications!
Come and see the people at Oral Health. Email Kim: oralmed@adhb.govt.nz
Radiotherapy IS justified to kill the cancer. Her aim is to minimise the damage. She thinks medicine and dental care would work together more.
She will meet us again in four weeks. Our homework is to calculate our private spending in dental care over the years since RT. She also asked us to recommend products we use for oral care e.g. brands of toothpaste.

Factors we can and can't control in the care of our teeth from Lancet

Research into mucositis

Earlier Kim Gear introduced Annie Bestie, who is studying a PhD in Biological Sciences. Her research topic is mucositis. She is investigating whether certain bugs might contribute to it. We hope to have Annie back to speak to us next year.

Laryngectomy Study

Carlene, a Speech Language Therapist, attended the meeting. She is working with a University of Auckland research team. They are investigating issues resulting from total laryngectomies.
The emphasis of the study is “consumer engagement”. The researchers want to identify what support and care DHBs could be offering laryngectomees. There are inconsistencies between the DHBs. They hope they can get rid of these inequalities. As part of the study a student will interview participants.
The researchers want to hear from as many Auckland and Northland laryngectomees as possible. The project will begin February or March 2016.
Contact Carlene for more information. cperris@adhb.govt.nz

Head and Neckers Meeting: Our new direction

By now it was 11 am and many people had to go. A number of members stayed behind to talk about our new direction. Diana chaired this meeting. 

Logo
Kevin shared the results of voting for the new logo. He has changed the block of colour over the motto to a bridge. We are still waiting for approval from the hospital and Cancer Society re the use of their logos. We thanked Kevin for his efforts.

Briefing Paper

• The Briefing Paper sent out to members outlines where and how we move forward. There is a need to advocate for head and neck people as we heard from Kim and Carlene.
• What are the risks we might suffer? We need to think of this, for example the risks around gaining enough income through donations.
• Are we on the right road or the wrong road? Members agreed with the road we are now on.
• In the past the group was quite a loose association. Formality was not needed. To get a seat at the table we need a more formal status.
• Charitable trusts are expensive with complex legal requirements so becoming an incorporated society will be better. We can register and then apply for charitable status.
• Donations will qualify for tax deductions and we can join the Spark Give a Little site.
• Kevin would like us to be on a level playing field with the Cancer Society in terms of tax
• deductible donations. He has business contacts who could be willing to donate.
• The Cancer Society will work with us in a complementary way. Diana will talk to them some more.
• Our big aim is to bring people together. We would like to increase to 500 – 1000 people including patients and caregivers.
• Services and numbers are not available all over New Zealand but we can have an online conversation. Meeting survivors is inspiring in person and online. We don’t know what side effects we will get from head and neck cancer. From large number of people we can learn more.
• Should we be scared about cost? A website with a chat function, forum, and public and private groups costs $70 a month. The set-up might cost $1000 but it is doable. It won’t be instant but can be done over time. Kevin said he could cover the first two months. Cancer Society have also offered to fund our first year.
• Trevor and Alison had some reservations about losing connection with the Cancer Society. Kevin said this group is a powerful resource in itself. We just want a broader vision. We don’t want to lose anything of what we already have but to add to it.
• A patient from Northland was present. We discussed how we could support people up there. 

Thanks
We are thankful to Domain Lodge for their meeting space, refreshments and help. Thank you to Kim Gear for her powerful presentation.
This meeting closed at 11.30.

Head and Neck Cancer in the News

The abridged article from Radio New Zealand features our own head and neck consultant John Chaplin asking for an HPV vaccine for boys. HPV is one known cause of head and neck cancer. These types of cancers are on the increase.

Doctors seek HPV vaccine funding for boys

The human papillomavirus (HPV) vaccine, known as Gardasil, is funded for Year 8 girls to protect them against cervical cancer as they grow older. It protects against the four types of HPV that cause most cervical cancers and genital warts, and is offered at school at Year 8, or ages 12 and 13, potentially before sexual activity commences when the virus can be spread.

An Auckland head and neck surgeon, John Chaplin, said four in every 100,000 New Zealanders a year - men and women - get oropharyngeal (throat) cancer, 90 percent of which is related to the HPV virus.

"You get exposed to the virus when you're young, usually when you become sexually active. In fact, most people are exposed to the HPV virus if they're sexually active," he said. "So everyone basically is exposed to the virus. A percentage of people become long-term carriers of the virus and then, if you become a long-term carrier, your chance of getting oropharyngeal cancer is high, 25 percent."

Dr Chaplin said rates of other cancers of the head and neck were decreasing, but that was not the case with oropharyngeal cancer, which was rising worldwide because of HPV.

He said there was a lag after exposure to the virus, with cancer often developing in Caucasian men mainly in their 40s, 50s, and 60s. Most survive but there are side effects from treatment. "Patients end up with changes to the lining of their mouth; they get often a dry mouth because of the saliva glands get damaged from the radiotherapy treatment. They have alteration in their taste and they have difficulty swallowing. The chemotherapy that is used can affect hearing, and can also affect sensation of the arms and legs."

Dr Chaplin said the vaccine, which research reveals is cutting cervical and throat cancers in women, would protect men too.

The chair of the Medical Association's General Practice Council, Kate Baddock, said higher levels of immunisation against HPV were needed. "If we don't have enough girls vaccinated and we have boys carrying the virus as a vector, we have continued spread and no control."

Dr Chaplin agreed. "The problem with the immunisation programme that we've got is that we're only actually immunising half the people to start with [and] only 60 percent of those are taking up the opportunity so therefore the percentage is actually less than half - it's more like 30 of the total population [immunised]," he said.

"It's a growing problem. This is something that is not going to go away. We know the cause of it and we know that there's a cure. So I think boys should be immunised."

Have our say about health strategy

We are invited to have our say about New Zealand’s health plan for the next 10 years and it’s easy to do.

The Ministry of Health has updated the New Zealand Health Strategy. The draft health strategy focuses on the next 10 years. The aim is to ensure all New Zealanders live well, stay well, get well. See the link here.

The draft strategy covers challenges and opportunities for the health system. It defines future outcomes. It states the principles and behaviours that will enable it, and 5 strategic themes:
· people-powered
· closer to home
· value and high performance
· one team
· smart systems

Anyone interested in the future of New Zealand’s health and disability system is welcome to share their views. Submissions close 4 December 2015. 

Here are the ways to submit formal feedback:

• Complete an online survey
• Email your feedback tonzhs_strategy@moh.govt.nz
• Post your feedback to:
  New Zealand Health Strategy Update Consultation
  New Zealand Health Strategy Team
  Ministry of Health
  PO Box 5013
  Wellington 6145

You can use a submission form (Word, 214 KB) with questions that may help with providing feedback. You do not have to answers any or all of the questions included.

That concludes this month's newsletter. Please feel free to comment on the blog. We are still in the set up stages and you might be able to suggest topics to be added, deleted or expanded on.

Cheers
Maureen