Category Archives: Uncategorized

NICE Head and Neck Guideline Partial Update

NICE has now published its updated head and neck cancer guideline. The update was prompted by Professor Hisham Mehanna’s research study  PET-NECK. This study investigated the potential of monitoring patients using FDG PET-CT scans to assess lymph node involvement rather than carrying out an automatic neck dissection.

Guideline

Professor Mehanna and his team deserve congratulations on their practice-changing study which spare patients from unnecessary surgery.

NALC, as it has done for every NICE committee on head and neck cancer, provided the lay members of the committee.

 

Immunotherapy News

ACCORDING TO THE BBC on 3/6/18:

About 70% of women with the most common form of early stage breast cancer can be spared the “agony of chemotherapy”, researchers say.

It follows trials of a genetic test that analyses the danger of a tumour.

Cancer doctors said the findings would change practice in UK clinics on Monday, and meant women in this group could be treated safely with just surgery and hormone therapy.

As a matter of urgency, research is needed to find similar hormone treatment for patients with cancer at other sites, including head and neck, and if they will have similar benefits.

Immunotherapy

immuno

One of the problems of traditional cancer treatments is the effect they have, not just on the tumour but healthy tissue as well. In the case of head and neck cancer, this leads to problems, such as difficulty in swallowing or dry mouth, which persist for life.

We are only just seeing the introduction of immunotherapies in the treatment of head and neck cancer, mainly in clinical trials. They offer several potential benefits such as no harm to normal tissue and they can be targeted at patients for whom it is most likely that they will work. The side effects during the treatment are also less than seen in conventional chemotherapy.

It has been found that nivolumab increases survival times for patients who have had a relapse after chemo-radioatherapy (CRT) for advanced cancerA. Now a study has been looking at delivering the immunotherapy at the same time as the CRTB. Is it safe? Is it well tolerated by patients?  The results of this small-scale study were encouraging. Further studies are now needed to identify the full benefit of the immunotherapy in terms of recurrence and survival.

There are no magic bullets for cancer treatment but immunotherapy continues to be a promising approach for better outcomes for patients.

Notes:

A     Study led by Professor Kevin Harrington, Royal Marsden 2016

B     Study led by Professor Maura Gillison, MD Anderson Cancer Center, Texas 2018

Amazon Smile

HNChelp has been financially sustainable for some years. Our members are generous in their donations, we have two events each year to raise funds and we have supporters like the Rotary Club of Clay Cross. The National Association of Laryngectomee Clubs, NALC,  is not in such a situation and needs your support

Recently many schemes have been launched to make donations to a charity when a purchase is made from a variety of online outlets. Amazon has a large share of online sales and if you buy from them you can get a donation to NALC of 0.5% of the value of your purchase .

If you Google “Amazon Smile” and login to your Amazon account, or create a new account, you can choose  the charity that benefits from your future purchases. Entering The National Association of Laryngectomee Clubs in the search box will ensure NALC gets a donation every time you use Amazon.

 

HPV Jabs for the Boys

There is a Westminster Hall debate on vaccinating boys against HPV on Wednesday 2 May, 9.30-11am.

 You can watch the debate live on Parliament TV.

Head and Neck Audit

Data for Head and Neck Oncology (DAHNO)  provided vital information about the delivery of treatment for head and neck patients for many years. Though there were flaws and limitations in the completeness of its reports, it gave patients and carers valuable information in assessing the care that was provided.

Since the tenth DAHNO report covering 2014, I have found no audit information about head and neck cancer. HANA took over from DAHNO and collected a limited amount of data in its first year of operation. It was then handicapped by the withdrawal of financial support for its work. I am currently uncertain as to whether the audit is dead or alive.

The DAHNO group was a valuable forum. It had members from all the clinical groups involved in delivering care to head and neck patients, as well as patient, carer and voluntary sector members, such as NALC. The NICE Quality Standards for head and neck, published in 2017, relied upon the evidence that the audit would provide. For example one of the quality standards was about giving patients choice about surgery or other treatment options. Without the audit there is no way of getting information about what is actually happening to patients.

 

BBC2 Hospital Episode 2

On Tuesday April 3rd the second programme in the BBC series “Hospital” followed some head and neck cancer patients at QMC, Nottingham. It certainly provoked a mixture of emotions. The problems faced by the head and neck team because of shortages of specialist staff have alarming implications for patients. Targets are set for timely treatment with good reason given the prospect for less favourable outcomes if delays occur. On the other hand, one could not fail to be moved by the dedication  and work of staff to do the best they could in the challenging circumstances.

QMC has had an excellent reputation in head and neck,  with world-renowned clinicians such as Emeritus Professor Patrick Bradley, who was a former NALC patron, Some of our members receive their care at QMC and it continues to have a high reputation. Indeed the trust has extended some services to all of us regardless of some being “out of area”.

NHS staff such as the head and neck team at QMC are being let down. They are not able to deliver the service they want to provide, and  which they were able to do  a few years ago.

HNChelp Embraces Social Media

HNChelp now has a twitter account

@hnchelp

Many of our contacts and collaborators, such as NALC, HPV Action and NTSP, have accounts.

Twitter provides a medium for supporting them and also adding our own perspective.

It may take a bit of time to get up to speed however!!!!

Annual Report 2017-18

Financial Matters

Broadly speaking expenditure has matched our income, despite an increase in activity. As usual members have generously supported us with donations and contributions to the costs of activities. The Rotary Club of Clay Cross supported us once again and we held two fundraising events – a coffee morning and a hospital stall. We have split the funds generated at these events between our group and NALC, as previously agreed.

Meetings and Membership

The usual pattern of two meetings a month has continued, with extra social activities on top. We have welcomed many new members during the year, including many who travel considerable distances to be with us. Several members are also involved with Heads2Gether, who meet in Nottingham, and we are building links between the two groups.

Special Events

For many the highlight was the trip to the National Memorial Arboretum, at Alrewas and we intend to visit again. The Coffee Morning, organised for European Head and Neck Cancer Awareness Week, was well attended and raised significant funds. In July we had another canal trip and in December travelled to Matlock, for the Victorian Market.

Our afternoon meetings saw several visiting speakers. In April a team of engineers developing a new method of speech for laryngectomees gave us a presentation. At two other meetings we welcomed suppliers of larynegctomee items.

Work With Hospitals

We had a stand at the Information Point at Chesterfield Royal in June, raising funds and awareness of head and neck cancer symptoms. The SLTs made several requests for us to support patients, and some have become members. The ENT ward is now using the boogie board we gave to them and other boards have been given to individual patients.

Our links with QMC in Nottingham continue to develop and they have extended to all our members the services of a late effects clinic, whether or not their treatment was in Nottingham.

Some members are supporting patients at Kings Mill Hospital, in North Notts.

We also have had and have responded to requests for support from patients who have contacted us through our website, which has had over 12.000 visitors during the year.

Local Links

We continue to support and work with the Nenna Kind Cancer Drop-In Support Centre, which runs a minibus to Weston park hospital, for patients needing radiotherapy. We have been a member of NDVA for many years and will continue to be so after its recent evolution to cover a wider area. As mentioned above we have started to link to a support group in Nottingham.

National Links

Our Secretary continues as President of NALC and to work with NICE on two head and neck cancer committees. A large CRUK funded clinical trial, CompARE, which we supported as its sought to get started is now successfully halfway through its recruitment phase. Our members have once again made a significant contribution to NALC.

Thanks

34SP continue to host our website for free, since we are a registered charity, and we send them our thanks. The Olde House and its staff are excellent hosts for our group and are unfailingly helpful.

 

HPV Vaccination Judicial Review

The Throat Cancer Foundation is preparing to seek a judicial review of the policy that the Joint Committee on Vaccination and Immunisation (JCVI) have to not vaccinate boys for HPV, despite the fact that the vaccination is given to girls at age 12/13.

They believe that the government has a moral obligation to protect the health of  boys, and that by not making protection against HPV available to them they are completely ignoring the suffering caused by and lives lost to cancers caused by HPV. 1 in 20 of all cancers are caused by HPV and 2,000 men a year in the UK develop one of these. As a safe vaccine is available these cases are totally preventable.

Their lawyers have offered to represent them for free due to the importance of this case, but they will still be liable for the court costs. It is expected these to be ring fenced at £15,000. They have launched a CrowdJustice campaign  to raise these funds. PLEASE CONSIDER SUPPORTING THEM

CROWDJUSTICE LINK