What a year this has been in so many ways! A war in Europe and a cost of living crisis  coming after 2 years dominated by the Covid pandemic. Closer to home, NALC has finally run out of funds to sustain paid staff and a London office. The good news is that with its new structure using only volunteers all of its services will continue for the laryngectomee community.

HNChelp has met every month this year, excepting our usual August break, and we finished with a Christmas celebration. Members enjoyed great food, a raffle where everyone got a prize and a Secret Santa. Donations and the raffle more than covered the costs of the event.

We took time to remember a former member, Sandra Curran, who was caregiver to her husband Peter, a laryngectomee. Sandra gave tremendous support, especially to new members joining our group.  Sadly she was diagnosed with pancreatic cancer in 2019 and passed away in 2020.  Peter has written her story and it is available on the Pancreatic Cancer UK website

Sandra

Pancreatic cancer is such a difficult cancer to diagnose  and Sandra’s story highlights some of the problems that patients encounter in their journey and lessons that need to be learned.

Our October meeting saw a great turnout as we welcomed once again visitors from Severn Healthcare, Paula Barnes and Oliver Davies. They gave an update on the Severn range of prescription items including the latest base-plates.

Much of the time was taken up with the experience of our members of hands-free speech devices. These represent the gold standard in achieving a new voice. They have improved considerably in the past 20 years but some issues remain, including the effects of mucous and coughing on their effectiveness. As always some patients’ anatomy after surgery and things like the pressure reached when using a speech valve can affect their suitability and success.

Perhaps the most important conclusion from the conversation was the need to put in the time and effort needed to learn how to get the best from these hands-free HME devices.

(Professor Vin Paleri)

I can recall when I was told, over twenty years ago, I had cancer of the larynx. After finally getting checked out and having a biopsy I turned up to a clinic to hear the best or worst news. As it happened, it was the worst and I did have cancer of the larynx. I was with the doctor for around 2 minutes and I left the consulting room to await a further appointment when treatment would be discussed. The news was that I had a stage 2 tumour and that radiotherapy was likely to be the appropriate treatment. The news was delivered in a matter of fact way and I heard nothing from the doctor that invited me to share my thoughts or ask questions.

At this time I was reading the book “C because cowards get cancer too”, by John Diamond a journalist who was married to Nigella Lawson. His throat cancer journey did not go well and he died in 2001. In his book he described when he got the worst news of all from his consultant, that his cancer was not curable. “He gave us the news white-faced, nervous and with eyes downcast as if it was something both unsayable and already said”.

In July Channel 4 broadcast a series called Super Surgeons, which featured Professor Vin Paleri, an ENT surgeon at The Royal Marsden Hospital. In the second of three programmes his patient, Peter, had a difficult oral cancer. Several courses of treatment were employed but finally the cancer returned with no viable treatment options left.  It was wonderful to see the connection and empathy between Professor Paleri and Peter and his family as his treatment progressed. When the treatment options ran out the conversations were sensitive and extremely moving.

I am sure this part of the care pathway, sharing bad news, has improved since my time. As seen in the programme, Professor Paleri represents the best of the NHS. In the other two programmes in the series, we saw him using robotic surgery to treat a patient reluctant to have a laryngectomy and carrying out a partial laryngectomy on another. I can thoroughly recommend viewing the series of programmes on All4, if you have missed them.

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Our July meeting saw an excellent turnout, though inevitably some were missing due to being on holiday.

As well as catching up with members news there was a very valuable discussion about new laryngectomee products from several manufacturers.

What was clear from our members experiences was that a product that worked well for one did not guarantee that it worked for another. The problem of mucous production was but one that saw a wide variation in individual responses. Being able to mix and match products from the range of manufacturers has always been valuable but it does now seem to be at risk.

We look forward to meeting again in September and have a varied programme of activities and meetings to look forward to.

Being able to speak without having to occlude the stoma or hold an electrolarynx  to the sweet spot is a valuable skill. For those with esophageal speech it is no problem but for the rest of us it is a challenge.

Many years ago, I was given a hands-free device. It had to be placed in a baseplate, instead of a normal HME,. However it was large, difficult to set up and I have rarely used it. This is partly down to the fact I produce a large pressure when speaking with a voice prosthesis.  I am not alone however because research indicates the success rate in using  a hands-free device  is not high.

At the March meeting of HNChelp, Paula Barnes from Severn Healthcare, gave a presentation about a new Inhealth hands-free hme. It is very different to previous solutions and it will be interesting to see if it can increase the numbers of our community who can finally speak hands-free.

Are we different?
There is plenty of anecdotal evidence that a laryngectomee’s altered breathing mechanism affects the vulnerability to respiratory infections. The nose and mouth are redundant when air is taken in or exhaled; instead the neck stoma is the entry and exit point. I have not had a cold or the flu since my surgery 20 years ago, and I know of others with the same experience.

Covid Tests
To check for current infection, PCR tests were the first to be employed. The latest guidance on the NHS England website, as of December 23^rd, is that samples need to be taken from both the tonsil area and the nose. The first lateral flow test kits gave the same advice.

Laryngectomees?
Clinical opinion in the UK and elsewhere, including USA, was that the stoma needs to be swabbed. NALC, with the help of University College Hospital London, produced guidance recommending swabs be taken from the nose and additionally the stoma, rather than the throat. (See earlier post)

Newer Lateral Flow Tests
The test kits supplied in recent months provide different instructions. No longer are samples to be taken from the throat, only from the nose. Swabbing the tonsil area is difficult and uncomfortable, especially for schoolchildren, who needed to carry out these tests from last autumn. Making testing easier was perhaps a necessity to ensure tests were carried out as required.

Will the Newer Tests Work for Laryngectomees?
Lateral flow tests are not 100% reliable for people with a normal airway. There are many anecdotal reports from people who have tested the nose and then soon after sampled both the nose and throat with contradictory outcomes. Will only testing the nose and ignoring the stoma give less reliable results for our community, given our different breathing mechanism?

The article here illustrates some recent concerns from Prof. Jennifer Rohn (UCL)

LINK

Also some research has suggested nasal swabs are less effective for detecting infection with the Omicron variant and the rapid tests give a positive result several days later than a PCR test would do.

LINK 2

Priority for Early 2022

NALC will be seeking advice from our medical advisors and partners about effective Covid testing. My personal inclination, if carrying out a lateral flow test, is to continue to sample both the nose and stoma but definitive clinical guidance is needed.

Probably just in time before the Covid Omicron variant really took hold we gathered for a Christmas Social. We chose a location where we would not be mixing with the public as we would at our base at The Olde House.

It wasn’t business as usual however. We followed the guidance as best we could by taking lateral flow tests, wearing masks for some of the time and ventilating the space throughout. Nonetheless the attendance was a bit lower than usual as some members have been severely restricting social contacts.

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We are currently helping 3 patients undergoing treatment and supporting them at this time is far from easy whilst keeping people as safe as possible from Covid.

The development of effective vaccines for Covid has saved tens of thousands of lives to date and will save even more in the future. Twelve months ago we were uncertain about the effectiveness of any of the various vaccines under development but now have several that have proved to be effective at defending against serious illness or death. Science at its best!

Cancer presents a more difficult challenge than combatting a new virus, even one that causes a pandemic. Cancer arises from cell changes through damage, but these can have a myriad of triggers or causes. It can be radiation such as ultra-violet from the Sun or chemicals such as those ingested when smoking a cigarette. Treatments starting with surgery and later radiotherapy and chemotherapy have saved many lives but are not as yet a “cure”. The latest arrival on the scene is immunotherapy. It is a type of treatment that helps your immune system, which combats other diseases and infections, fight cancer.

New Treatment Destroys Head and Neck Cancer Tumours in Trial

This was the headline for an article in the Guardian newspaper in October. The trial looked at the benefit of combining two immunotherapy agents compared to the current chemotherapy regime for patients with recurrent or advanced head and neck cancer. The agents were nivolumab and ipilimumab.

There were some remarkable patients’ stories, when having had a terminal cancer diagnosis they were now cancer free and enjoying life to the full, several years later.

Sadly the reports do not present the complete picture. Overall the survival statistics were not significantly better. The benefits of the treatment were seen only in some patients – those who carried a particular genetic marker PD-L1.

Professor Kevin Harrington, of the Royal Marsden and Institute of Cancer Research, said “despite the lack of statistical significance, these results are clinically meaningful. We will need to do a longer follow-up to see if we can demonstrate a survival benefit across all patients in the trial.”

On Monday December 6^th NICE reported some significant news:

As you will be aware the Department for Health and Social Care has asked NICE to carry out an appraisal of nivolumab with ipilimumab for untreated recurrent or metastatic squamous cell cancer of the head and neck cancer.
For information, the company have advised that they will no longer be pursuing a marketing authorisation application in this indication at this time.
Therefore, NICE has decided to suspend this appraisal from its current work programme.

So the headlines may have been a bit overblown. However there is no doubting the benefit of continuing to develop immunotherapy treatments, not least because they are far kinder to the patients than the usual chemotherapy agents.

It seems likely that people will be covid testing themselves or going to a test centre for some time ahead.

The NALC office continues to receive enquiries about how the test should be done if breathing through a neck stoma, not the mouth and nose. To help a leaflet has been produced with the assistance of University College Hospital London.

The leaflet can be obtained here

covid test 

We met again outdoors in August, after a break in July when many members took advantage of the end of restrictions to go on holiday. Before Covid we held our meetings in a pub but members were not ready yet to meet indoors.

As can be seen in the photograph we were blessed with a wonderful summer’s day. There was much news to catch up on about holidays and family events, and more seriously some health issues. Some familiar laryngectomee topics of how long valves were lasting without a leak, using nystatin to combat candida and the best shower guard also cropped up.

As autumn approaches we are hoping to have found a new indoor base where we can hold our meetings, but one exclusive to our members and not the general public, to lessen the Covid risk.