Newsletter€¦ · Opdivo (Nivolumab) plus Yervoy (ipilimumab) to include intermediate- and poor-risk patients with advanced renal cell carcinoma. We will keep you informed of the

Page 1 Issue 7 2017

Newsletter Issue 7

www.kcsn.org.uk

Welcome to the final edition for 2017. We hope you have had a good year and would like to wish you a

happy Festive Season. This edition has an article written by KCSN member Clare about her first year on Sutent,

news from ESMO, a golden wedding celebration, stop press with the latest news reports and a top tip. We also

invite you to join our Patient Registry and explain why it is so important.

Best Wishes for a Happy New Year from the Editorial Team

Clare’s Story

When I was first diagnosed with RCC I couldn't grasp what was happening to me, I

was in complete shock. I googled RCC but there was way too much information and

then by chance I found KCSN and thank goodness I did, they were so welcoming and

friendly and the support was exactly what I needed. I was given very helpful advice and

any time I didn't understand something there was always someone who knew the

answer. I have gained so much knowledge about my cancer and what drugs are

available and in which line they are given, I was able to find out through the group

how to access benefits and how to find out about up and coming clinical trials too and

I have made wonderful friends with fellow KC warriors and I have been able to

discuss my deepest darkest feelings with them in a safe place. They have helped me to

come to terms with my cancer and show that there is a life after a diagnosis and that I

am not alone x

Smoking: Smoking is a known risk factor

for renal cell carcinoma (RCC), and has

been proven in a number of studies.

In addition to being a risk factor for RCC

development, recent research has shown

that cigarette smoking is independently

associated with worse overall and cancer

specific survival in patients diagnosed with

advanced RCC. Smokers in general have

worse health outcomes due to the high

rates of co-morbidity linked to tobacco,

including cardiovascular and

respiratory diseases.

NICE Prescriptions: NHS

England has agreed plans to

save up to £141 million a year

by recommending low value treatments no

longer be provided on the NHS.

A consultation on prescriptions for some

‘over the counter’ products will also be

launched in the New Year.

KCSN will keep an eye on the consultation

for any impact on cancer patients, especially

considering the widely prescribed

loperamide for those on TKI drugs.

Full details are in the news section of our

website: www.kcsn.org.uk/news-room

Top Tip

Medical records can often be bulky files and difficult to access quickly in an emergency.

KCSN’s top tip is to have in your wallet, purse, glove compartment of the car and

pinned to your fridge door an up to date medical history printed on one side of A5.

Include: Full name, address and date of birth; Next of kin; GP name, contact number &

NHS number; Hospital name, contact number & hospital reference number;

Consultants names and speciality; Diagnosis and any operations or treatments with

dates. Current medication, dosage & any allergies; Dates of last scan & summary.

It is easy to hand over to any paramedic or A&E department in an emergency and has

all the relevant information clearly laid out. No misunderstanding of the medicines or

current medical issues which makes life easier for the medical staff to help you quickly.

Immunotherapy & EMSO

IKCC ( International kidney Cancer Coalition) were delighted to work with ESMO (European Society For Medical Oncology) to

produce a booklet about managing Immunotherapy side effects. The KCSN is a founding member of IKCC and Rose Woodward is a

volunteer Board Director on behalf of UK patients. The Coalition is a way for kidney cancer groups

from all over the world to come together and share knowledge and provide a strong voice in

research, access to treatments and patient involvement.

For patients on the new immunotherapy drugs, it would be good to get your feedback, so please

contact us via email [email protected] or post to our closed Facebook group. www.esmo.org

** Breaking News ** Fantastic news for people with advanced kidney cancer: the lenvatinib (Kisplyx) plus everolimus combination

has been recommended by the National Institute for Health and Care Excellence (NICE) for use by the NHS in England and Wales for

people with advanced renal cell carcinoma (RCC) that has been previously treated. See our website for details.

Page 2 Issue 7 2017

Contact details: Kidney Cancer Support Network

Website (including patient forums): www.kcsn.org.uk

Facebook group: UK Kidney Cancer Support Network

Twitter: KidneyCancerSupport @KidneycancerSN

Email support: [email protected]

Phone support: 01209 890326

Please note that personal views and opinions expressed and any products mentioned are not necessarily endorsed by KCSN. The information contained in this newsletter is not intended to

replace advice or medical care from your doctor. *** Registered as a charity in England & Wales: No. 1164238 ***

If you need this newsletter

in a plain text format,

please contact us.

Janet & Chris recently celebrated

their Golden Wedding Anniversary

in style with family and friends.

They generously asked for donations to

KCSN instead of presents and we are

very grateful. Our Congratulations to you

both from everyone at KCSN.

Thank You to WOMAC

Established in 1979, Women On the

Move Against Cancer (WOMAC) is made

up of around 65 female volunteers

working in the automotive and associated

industries.

WOMAC organises events and activities

to raise money for cancer charities. Over

the years, WOMAC has donated more

than £900,000 to cancer-related projects,

searching for more effective treatments

or improving the quality of life for cancer

sufferers, their families and carers.

We are very grateful to WOMAC for

picking KCSN as their charity for 2018.

See future newsletters for details of their

events during the year.

We would to say a BIG THANK YOU to everyone who has supported the KCSN with fundraising efforts this year. People have created

TOTALGIVING charity pages for sponsored marathon running, walks and cycling, dinner dances and even paragliding. Others have kindly

donated funds in memory of a loved one or raised money holding events at work, raffles, family occasions, birthdays, cake sales, auctions, making

jewellery, social occasions, dinner dances and Balls. We have people who kindly donate each month either through the KCSN website or their

employer’s payroll. We are truly thankful to everyone and you know your donations are used carefully and wisely. Your help means we can reach

out to make sure no-one has to face kidney cancer alone.

KCSN is registered with the Fundraising Regulator; their code ensures the work of fundraising organisations is legal, open, honest and respectful.

You can read more about how you can help KCSN help other patients and families here:

http://www.kcsn.org.uk/support-us/how-to-make-a-donation/

www.easyfundraising.org.uk/causes/kidneycancersupportnetwork

www.totalgiving.co.uk/charity/kidney-cancer-support-network

*** Breaking News ***

The European Medicines Agency will

review Bristol-Myers Squibb’s application

seeking to expand the indications for

Opdivo (Nivolumab) plus Yervoy

(ipilimumab) to include intermediate- and

poor-risk patients with advanced renal cell

carcinoma.

We will keep you informed of the latest

news via the website.

* * * * * Patient Registry - We Need Your Help Please * * * * *

We would like to ask you to become involved in very special and unique project. We

are gathering information about the diagnosis, treatment and care of kidney cancer

patients in the UK. We have set up a kidney cancer patient registry on our website, and

we would like to encourage patients to provide a health profile. Your health profile is a

record of your care and treatment pathway, from the day you were diagnosed through

treatment and beyond. This will be the first time kidney cancer patients have been able

to provide their data in a structured and efficient way. Patient-generated data like this

has been a huge gap in the armoury of clinicians and researchers, who need information

about how treatments are used in the real world to help them in their work.

The way kidney cancer treatments are used and the effect of these treatments on the

quality of life of patients is called real world data. Real world data is the information

collected about the use and effect of a treatment outside a clinical trial. It is a serious

attempt to record what happens as patients go about their everyday lives whilst being

treated. The use of real world data is becoming increasingly important to researchers,

clinicians, and regulatory bodies, like the National Institute for Health and Care

Excellence (NICE), where it can affect the decisions made about access to new

innovative cancer treatments.

The collection of real world data has always been the problem. As a patient you may

talk about some elements of your care when you attend a clinic appointment, and it

might be entered on your NHS health record … but sadly very often it stays there! As

patients we possess vital information and it needs to be recorded, collected and then

made accessible to help us get the best care possible for other kidney cancer patients

now and in the future.

Your personal health profile will be totally confidential, your data will be encrypted and

anonymised. No personal identifying information will be accessible or made available to

anyone outside the KCSN charity. The requirements of the Data Protection Act will be

strictly followed at all times when handling personal health and identifying information.

We are in a unique position to do this because we have the most active

membership of patient and carers to run an important project like

this. We would like to invite you to become part of the first ever

UK-wide registry of kidney cancer patient information.

www.kcsn.org.uk/community/patient-database

Facebook Suite of Groups & Social Events

The Facebook Groups are very busy. There are now nearly 800 members with 600

active on a regular basis. The group stats show that there is always someone

posting or reading at all times of day and night and therefore on hand to help or

support others. In just the last week there have been about 3000 posts, comments

and reactions.

In January there will be lunches & coffee meet ups around the country and you are

welcome to join us. Details will be in the Facebook suite of groups.

Thank You