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Head and Neckers

Newsletter of the Head and Neck Cancer Survivors’ Support Network, NZ

OCTOBER, 2015 VOLUME 1, NUMBER 4

Contents

From the Editor

Speaker: Kim Gear

Mucositis

Laryngectomy Study

Head and neckers formal meeting

HPV vaccine for boys

Patient Story

Have our say

Useful web links

From the Editor This month was the most dynamic for Head and Neckers. We opened our temporary website, and posted our first newsletter online. The website has a copy of the newsletter, and some additional resources you may find useful. You can check it out

here: http://headandnecknetwork.blogspot.co.nz/

Thirty people were present at this month’s meeting. There were many new faces. Welcome to all the new attendees. One reason for the steep increase in attendance the topic: oral health. This is a burning issue for most of us. It is also gratifying to see that our message has spread. The more people who attend, the louder our voice will be. (Maureen

Jansen)

Speaker: Kim Gear Kim Gear from Oral Health gave an 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

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Importance of saliva

pH level in mouth

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 kim 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.

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.

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Secret weapns

Views of people present

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 discussion points. They include comments made by patients and answers by Kim.)

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

The radiation booklet given to patients has several informative pages on oral care after RT. Not everyone was given the book.

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.

Why aren’t we informed more about the implications of RT? If it were spelt

out we might be more vigilant.

Could dentists in a geographical area, be designated to deal with head and neck cancer people?

We need to know the field of radiation so we can tell our dentists.

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.

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.

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. The dept. can put fluoride on teeth every two months.

Fluoride tabs are not effective because they do not cover the surface of

teeth.

Oral Health provides basic dentistry only. Later Kim said, "with regard to cosmetic dentistry, they make partial dentures and implant anchors". More

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Studies

involved implants are gold standard and these are determined on a case by case basis.

Oral Health now provides dental treatment for a year after radiotherapy.

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.

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

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

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.

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Briefing paper

Herald article featuring Auckland consultant

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 larger numbers 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.

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 cancer 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

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HPV is an increasing

cause of head and neck cancer

Alison’s story will

resonate with many of us

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."

Patient Story I am 61 years old and was born in Auckland. I have been married to Derek, who works for the NZ Defence Force at the Devonport Navy Base, for 40 years. We live in Takapuna and have now lived on the

North Shore for 36 years. We have two sons. Our older son is married and they

have a two year old son. They have recently returned from South Korea and are currently living with us. Our younger son and his partner are both secondary school teachers in London.

I worked in a Government Department for 10 years and then in retail creating beautiful bathrooms for people. My last job was being a homestay family host for university aged students. I really enjoyed doing that and keep in touch with most of the students. My cancer journey started three years ago. I noticed that I had an ulcer under my

tongue. It didn't seem to go away. I went to my GP and tried various remedies but

it didn't go away. I was referred to my local hospital and Oral Lichen Planus was diagnosed. Unfortunately there is no cure for this condition, just pain relief medication. I found it difficult to live with the constant pain. Time went by and it was getting more painful and the pain relief medication didn't seem to help. I became very depressed. I could barely speak or think clearly.

One day in May 2014 I walked into my GP's Surgery without an appointment. The nurse took one look at me and took me to her room and got my GP. I realised after

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Explosion in the ward.

she looked in my mouth something had changed. My life itself changed from that day on. I was urgently sent for another biopsy at my local hospital. I felt relieved that I was finally going to be helped. I knew it was serious.

My diagnosis was Squamous Cell Carcinoma. I was fortunate to have my operation done in August 2014 at Auckland Hospital by Mr Nick McIvor and his Specialist Team. The operation involved a tracheostomy, right thyroid lobectomy, right selective neck dissection and reconstruction with a right radial forearm free flap and split graft from the thigh. The operation took about 11 and a half hours. I didn't

realise the enormity of what I would be going through even with all the information I was given beforehand. When I think back it seems like a blur. The Specialist Staff in Ward 74 were incredible and I felt I was in safe hands. I thought of them as my 'Hospital Angels'. The operation went well. Once I realised what had happened and where I was I took small steps forward and back a few times. I tried very hard to do things for

myself. Unfortunately I reacted very badly to plasters and I was covered in a rash. As time went by I was allowed to go home for the afternoon, but on the way home fluid started to trickle out of one of the wounds on my neck. It turned out to be a fistula. I had to return to the hospital. I didn't have to have another operation but it meant the NG tube had to go back in. I was in hospital for 1 month. One day I was shown how to feed myself through the NG tube and unfortunately the tube blew off the connection and sprayed two nurses and the ceiling with Ensure Plus. Everyone

cracked up laughing and they said not to worry as it could have been something worse. I did manage to go to Cornwall Park to see the beautiful daffodils one afternoon with Derek. My 'Angels' outside the hospital had looked after me before my operation by taking me to the hot pools, to my favourite cafe, Little and Friday, and by decluttering my

wardrobe, stocking my freezer with soup, and packing my hospital bag. Derek updated our bedroom, and my girlfriend Chris, one of the 'Head Angels', bought beautiful bed linen and pillows so I could enjoy being in my room while I was recovering. A year on after my operation unfortunately I am still reminded every day I wake up that I had cancer by the challenges I face with eating and speaking as well as the scars that will never go away. I felt then that I had the need to meet and talk to people who had been through the same cancer.

Making contact was a little difficult but eventually I found the Cancer Society Chatline and had the courage to go online. One of the Cancer Society Nurses replied to my delight, and let me know about the Head and Neck Support Group. I am so happy to have found the group as it has have given me hope, support and confidence. I feel useful again and able to be heard.

My interests include adult colouring books, crafts, tai chi, yoga, meditation, meeting friends, walking along our local beach, gardening, volunteering, and going on date nights to the movies once a week with Derek. I try to be the best I can be each day and lipstick is a must, ha ha!!! I am looking forward to getting to know you all.

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

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Ministry of Health’s 10 year plan. We can have a say.

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 to nzhs_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

A submission form (Word, 214 KB) assists you with providing feedback. You do not

have to answers any or all of the questions included.

Useful Web links

New Zealand and Australia

Standards of Service Provision to Head and Neck Cancer Patients in New Zealand (Provisional)

Australia and New Zealand Head and Neck Cancer Society http://www.anzhncs.org/

Cancer Council Victoria, Australia http://www.cancervic.org.au/about-cancer/cancer_types/head-neck-cancers

United Kingdom

Macmillan Cancer Support website www.macmillan.org.uk Mouth Cancer Foundation http://www.mouthcancerfoundation.org/ Head and Neck Cancer Hub

http://www.ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/head_and_neck_cancers/head_and_neck_cancer_hub/

Merseyside Head and Neck Cancer Centre UK http://www.headandneckcancer.co.uk/

Canada

Head And Neck Cancers - CancerCompass

http://www.cancercompass.com/message-board/cancers/head-and-neck-

cancer/1,0,119,39.htm

USA

The Oral Cancer Foundation http://www.oralcancerfoundation.org/ The American Head and Neck Society at www.headandneckcancer.org Support for People with Oral and Head and Neck Cancer

https://www.spohnc.org/

Upcoming Events

2015 Our next meeting is on 3 December at 9.30 am, Doman Lodge

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2016

Australian and New Zealand Head & Neck Cancer Society,

Annual Scientific Meeting and the International Federation

of Head and Neck Oncologic Societies, 2016 World Tour.

25 – 27 October 2016

The Langham Auckland

Auckland, New Zealand

Website: http://www.ifhnosauckland2016.org/

Support Organisations

New Zealand Cancer Society https://auckland-northland.cancernz.org.nz/ Dove House http://dovehospice.org.nz/

Cancer Connect NZ is a free support service. It puts you in touch with a peer

supporter – someone who has had a similar cancer experience to you. It doesn't matter where you live in New Zealand - all you need is access to a phone. Every Cancer Connect NZ peer supporter:

has had cancer

or cared for someone living with cancer,

is trained and carefully selected to meet strict criteria

receives ongoing support

0800 CANCER (226 237)

Contact us: specialist nurse, Noelle Farrell (noellef@adhb.govt.nz) and for newsletter matters, Maureen (mjansener@gmail.com)

Thanks We are thankful to Domain Lodge for their meeting space, refreshments and help. Thank you to Kim Gear for her powerful presentation, Kevin for the logo, Diana for

a lot of the material here and Alison for her story. I will email this in Word and PDF formats but it will be on the temporary website too. We hope to have the full website operational in the first half of next year. Maureen

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If you want to be informed you can learn a lot from websites like the Oral Cancer Foundation and

Cancer Compass.

They inform as well as support.

Their forums are excellent and can provide support when you just

don’t know how you are going to cope.