Category Archives: Uncategorized

HPV Vaccination for boys

On Wednesday the JCVI, the committee that makes recommendations about vaccinations, delayed its final decision about extending the HPV programme to boys as well as girls. The reason given was that more work was needed on modelling the consequences of doing so.

This is a welcome development given the statements the JCVI  had previously published seemed to significantly understate the role of HPV in causing head and neck cancer.

Head and neck cancer patient groups are of one mind on this issue, as are the clincians’ associations, and we hope the  re-modelling will lead to a final recommendation for equal vaccination.

As 2017 Comes To A Close

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(Members at a recent business meeting)

We will end the year with a couple of regular social events. On Dec 1st we travel to Matlock for the Victorian Christmas Market and on the 13th we have our Christmas Lunch.

2017 has been something of a roller-coaster ride. We have had some superb events, such as the visit to the National Memorial Arboretum and our annual Canal Trip.  Membership has increased as we attract new patients from a much wider area – this shows how much support groups are needed and valued.

A less welcome aspect of the year has been the several times members have faced serious battles against health problems – cancer and otherwise. But every time members have supported each other and as a group we are stronger than ever.

Our focus is not confined to our members. We have supplied boogie boards to patients and to our local ENT ward to facilitate communication when patients cannot speak and raised funds to support NALC.

 

Immunotherapy Developments

On Nov 2nd Channel 4 broadcast a programme called A Summer to Save My Life. It followed the journey of 3 patients who were receiving immunotherapy treatment for their cancer. As can be expected not all of the programme was comfortable viewing. If you missed the programme then the All 4 website or app can provide it for some time.

NICE has been investigating the use of Nivolumab in head and neck cancer. To date imunotherapy has only been available via a clinical trial. In October NICE decided to approve use of the drug via the Cancer Drugs Fund.  Head and neck patients for who the more usual chemotherapy treatment has not worked will be eligible, though there are some limitations on the duration of the treatment.

More details here         LINK

Neckbreather Safety

The task of making sure all emergency service staff are aware of our needs in an emergency situation is an ongoing one.

Next year NALC will launch a campaign to improve on the current situation. The campaign will highlight how to spot a neckbreather, the common emergency items we use to assist this recognition and how to manage resuscitation and delivery of gases.

NALC has been a partner of  National Tracheostomy Saftey Project (NTSP) for some years. Later this month some members of our group and of the Manchester Laryngectomee Club will be working with the NTSP to produce some new educational video resources to assist with training of clinical staff.

European Head and Neck Awareness Week

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On Tuesday 19th September we organised a Coffee Morning to coincide with the European Head and Neck Cancer Awareness Week. Once again we used the 13th century Eyre Chapel in Newbold and were blessed with a warm and dry day.

As well as promoting knowledge of the  early signs of head and neck cancer,  we managed to raise over £200 and half of this will be donated to NALC.

As always at such events, Marjorie Thorne’s baking proved very popular, for immediate consumption or taken away for later.

We thank all our visitors for their generous support.

I Left My Voice on the Dining Room Table

Pat Wertz Sanders was a laryngectomee and a major contributor to WebWhispers, the USA based internet mail list and online resource. She died last year.

In 2014 Pat published a book about her experiences and it contains much information that other patients may find helpful.

Now, in ebook form, the book is available for free. It does not have the sophisticated writing style of my favourite cancer journal – John Diamond’s C: Because Cowards Get Cancer Too – but there will be few laryngectomees that do not find it helpful.

download here

If you do not have an ebook reader there is the option to download a pdf file.

 

Living With and Beyond Cancer

More and more people are living with the consequences of cancer and its treatment – they are said to be  Living With and Beyond Cancer. But currently there’s not enough research relevant to living with and beyond cancer.
The National Cancer Research Institute is working on a project to change this. They have opened a new survey for patients and the people who look after or have looked after them, and the professionals who work with them. The aim is to identify the most important questions that research should address.
Tell them the questions that you would like answered by research by filling out the survey and help  to improve the lives of people affected by cancer. The  survey will be open until 15 October 2017. You can find out more about the project at ncri.org.uk/jla.

(click on the links shown in green)

Immunotherapy Benefits

One of the worst aspects of head and neck cancer is that successful treatment can lead to permanent adverse effects on quality of life. These can involve difficulties with nutrition, swallowing or speech, which are basic functions for us all, with problems during and after treatment

An article in the Lancet reports on some benefits seen in a study looking at immunotherapy compared to conventional drugs

click here

HOWEVER these are worth looking at as well

TRIAL FAILURE

INCIDENT