Category Archives: Uncategorized

Hands-free Laryngectomee Speech

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.

 

 

Lateral Flow Tests – A Few Questions

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 23rd, 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.

 

Christmas Social

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.

december social
(
click to enlarge)

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.

Immunotherapy and Head and Neck Cancer

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 6th 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.

Laryngectomy Covid Testing – How?

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 

 

Together Again

hnchelp august

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.

Large Survey of Laryngectomee Covid Experiences

Information and data empower decision making. The past 18 months have seen unexpected challenges arising from the Covid pandemic. Laryngectomees, breathing through a neck stoma, are vulnerable hence research about what has happened since March 2020 is to be welcomed.

A large-scale survey was carried out in the UK  and the results have now been published:

SURVEY

Patients not only provided the information by responding and completing the survey but also contributed to the analysis of the results. As always NALC made a valuable contribution.

Returning to Work After Cancer

This week has seen the publication of an important source of information and support for head and neck cancer patients about the challenge of returning to work after treatment. Chris Curtis and The Swallows, with support from others, deserve great credit for raising awareness of this issue in their Back to Work Guide. It is available here

LINK

In the last couple of decades the age profile of patients has changed, with the increasing causal involvement of HPV in head and neck cancer. With patients consequently presenting at a younger age, the wish to return to work is of even more importance.

I had a laryngectomy aged 51, which was at the lower part of the usual age range at the time. As a secondary school teacher my employment depended on my voice and I had no certainty of being able to return after the operation. As it happened, after primary surgical voice restoration, I had reasonable valve speech but it was not up to speaking several hours during a working day. Fortunately the surgery left a great sweet spot on my neck for placement of an electrolarynx (EL). Subsequently the EL has been my primary method of speech and enabled 4 more years work as a teacher, before taking early retirement in 2007.

My experience illustrates a key factor in determining the ability to return to work – the functional outcomes after cancer treatment and how the demands of the job can be met. There are many other relevant factors but some of these pose important questions about impact of equality issues on the ability to return to work.

As a teacher, I was a public sector employee. With that came many benefits, such as decent sick pay, continuing for many months. Recovering from a laryngectomy takes a long time and it was nearly a year before I returned to work full-time. Had my employment circumstances been different, with less advantageous terms of service or had I been self-employed, the outcome may not have been so positive.

This is an area where there has been little research to guide us. Abi Miller, SLT at Chesterfield Royal Hospital, and Emma Kinloch, NCRI Consumer Lead, have both been working recently to remedy this. However this is only a start.  In the meantime the Back to Work Guide will be of great benefit to patients accepting the challenge of returning to work.

 

Freedom Day? Really?

Our group had intended to organise, later this month, its first indoor meeting since March 2020. However, despite all of us having had both jabs we have changed our plans.

Even as early as February 2020, some members changed their plans including cancelling trips to London, given reports of the arrival of coronavirus. Most members later received shielding letters, being extremely clinically vulnerable,  and have been taking every precaution to avoid infection. There is a reluctance, given the high current infection rates, to return meeting indoors. So for the moment we will meet outdoors or via Zoom.

Whilst this is disappointing, we are not back to square one. The vaccinations continue to appear to give protection against severe disease needing ICU care. Speech and language therapists have developed some excellent strategies to ensure speech valve services can continue. We will be meeting together again, as usual, before long. In the meantime we will be staying in touch and supporting each other as best we can.

As well as looking to stay safe ourselves we are thinking of the nurses, doctors and SLTs who support us. They face many pressures if there is another wave of infection and our thoughts are with them.

LARYNGECTOMEES DURING THE COVID PANDEMIC

It is now over a year since the first lock-down in response to the Covid pandemic.  Laryngectomees are vulnerable to Covid 19 and their lives were affected in many ways. After a laryngectomy patients will need support from clinicians for the rest of their lives, managing the neck stoma and a voice prosthesis. What effect did the pandemic have on these services and other aspects of daily life?

This survey of patients experiences gives some indications.

LARYNGECTOMY COVID SURVEY

(clicking on the link above will download the survey results)