Category Archives: Uncategorized

Before the Summer Break

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We had two meetings in July. At the first,  a visiting speaker from the cancer alliance covering the old North Trent Network area sought our involvement in an event at the end of the month. Patient involvement is needed in a review of the patient pathway. Our members contributed to a similar review in the East Midlands network.

For our concluding social  evening we organised a Summer Meal, which attracted a record number of attendees. We were delighted to see our Treasurer, Pam Gill, who for two years has been fighting cancer. She receives services from Ashgate Hospice and to thank them she took part in a recent sponsored event. She cannot walk far so some of her journey required a wheelchair. We were delighted to make a donation to the funds she raised. (Pictures can be seen in the gallery page.)

A few days later we were very sorry to learn of the passing of Barry Godfrey.  In his time as a member he had generously supported our work in many ways. (See the “In Memoriam” page)

Friendship

trip

Our group has many meetings during the year. We share difficult experiences  and discuss some serious issues, so it is great when we can enjoy ourselves.

This week we organised a trip to the seaside. Chesterfield is almost as far as you can get from the sea in the UK. We chose Cleethorpes as our destination on the Lincolnshire coast. The picture shows some of our members who joined the trip.

Benefits of HPV Vaccination

There have been already some indications about the benefit of  HPV vaccination in reducing cancer.

LINK 1

It is not just cervical cancer occurrence that may be reduced, head and neck cancer rates may benefit in the same way.

The UK is about to extend an HPV  vaccination programme to boys as well as girls.  The large % of head and neck patients that test positively for  HPV infection gives grounds for optimism that the vaccination programme will have a significant impact.

LINK 2

More Evidence of the Value of Immunotherapy

The annual meeting of the American Society for Clinical Oncology (ASCO) usually presents the findings of studies of great importance for the future treatment of  head and neck cancer patients.

This year the results of a study carried out by the  Institute of Cancer Research and the Royal Marsden suggested that immunotherapy was an effective first line treatment. In the UK immunotherapy has usually so far been a treatment of last resort when other treatments had failed. In the study the use of pembrolizumab was examined.

The study revealed clear benefits regarding survival outcomes from the use of immunotherapy as well as fewer side-effects.

Further information is available here

Clinician Training and the Patient Experience

Malcolm Babb, NALC President, speaking at a recent head and neck study day for Liverpool University Radiotherapy students

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Liverpool University is one of several that invites NALC to provide laryngectomee speakers to  contribute to their relevant courses. These could be in the areas of speech and language therapy or radiotherapy.

The student response to such contributions is invariably very positive. They welcome the opportunity to hear and question patients about their concerns regarding treatment  and the problems they experience in what may be a complicated cancer journey.

The recent study day in Liverpool provoked a wide range of questions and some thoughtful concerns expressed by the students.

A New Voice Using Latest Technology

There are several alternatives for speech after a laryngectomy but none of them comes without disadvantages. Patients’ circumstances vary considerably, not least the extent of the surgery and its consequences for future speech options.

Recently there have been several computer generated speech options proposed that employ recordings of the patient’s speech before larynx removal.  One of the latest is reported below

App

This looks like a useful addition to the options available, though as the article concedes the time and resources needed may be a problem.

Annual Report

At our AGM on Tuesday April 9th approved our Annual Report below.

Financial Matters

The charity remains in a strong financial position with income slightly more than expenditure over the year. We have received a donation from the Rotary Club of Clay Cross and held two fundraising events, a hospital stall and a Coffee Morning. Members have made generous donations and contributions to the cost of events and one large donation was made to support the purchase of boogie boards.

Meetings and Membership

As in the previous year our membership has grown. We have held our usual 2 meetings per month, with large attendances at the afternoon meetings.

Special Events

We were joined by visiting speakers at two of our afternoon meetings. A representative from the East Midlands Cancer Alliance listened to our experiences as part of the process of revising their head and neck pathway. Fiona Robinson, of Severn Healthcare, gave a very informative presentation much appreciated by members. We held our usual Christmas Lunch and Summer Meal and there were trips to the National Memorial Arboretum and to Matlock. Five members attended an International Head and Neck Conference in Nottingham in November.

Work With Hospitals

During the year we had several requests from Chesterfield Royal to meet with patients facing a laryngectomy and we had a stall at their Information Point in June. Having started with Chesterfield Royal we have begun the process of providing boogie boards to QMC Nottingham and Doncaster RI.

Local Links

Local partners include the Nenna Kind Drop-In Centre, Derbyshire Voluntary Action, Heads2Gether, Derbyshire Cancer Steering Group and more recently the Be Cancer Safe Project.

Other Links

Our Secretary continues to serve as NALC President. The CompARE study, which we helped get funding, continues to recruit well and is the first head and neck study which delivers immunotherapy to patients in the UK.

Online Activity

Our website currently attracts around 1000 visitors per month. As well as reporting on our local work a news section provides information on head and neck cancer developments and the site is mentioned on many other relevant websites. We thank 34SP for hosting our site for free.

Support Groups

Itzhak Brook, MD, MSc, Professor of Pediatrics and Medicine, Georgetown University School of Medicine has written recently about his experiences in joining a laryngectomee support group.

Article

At the end of the article he states: Helping others and making a difference helps me cope with my own handicap and overcome the hardships I face.

His experiences in many ways mirror my own.  After my surgery I eventually returned to work having coped well in my rehabilitation. A few years later, after taking early retirement I finally attended a support group meeting. Like Professor Brook, I gained so much and have continued to benefit from sharing experiences with so many others around the UK.

 

Jabs for the Boys – why no catch-up?

As reported in a post last month, we are seeing more evidence of the increasing  contribution of HPV to incidence of head and neck cancer.

Last year in the UK it was announced that boys, as well as girls, would be vaccinated against HPV. So far the suggestion of a catch-up programme for boys who have missed out has been ignored.

Daily Mail Article

Many parents who wish to protect their sons may find the cost of a private vaccination prohibitive and the decision of the DHSC will cost lives.

Epidemiology of Larynx Cancer

I was a typical patient when diagnosed with larynx cancer, though at the younger end of the spectrum being just 51.  I had a 30 year pack a day smoking history, to which I attribute my demise.

A recent small-scale study has given an indication  of what may be seen in the future.  The incidence of head and neck cancer has increased for many years, despite changes in smoking habits. because of the contribution of the human papilloma virus (HPV).

The increase in cases has been accompanied by a change in the age profile, with patients presenting at a much younger age than before. The recent study into glottic cancer revealed many of the younger patients were non-smokers but tissue analysis revealed high-risk strains of HPV.

The research is reported here        LINK