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Issue 3 - October 2018

Welcome to the KCSN Autumn Newsletter!

Welcome to the Autumn edition of the KCSN Newsletter. We hope you had a lovely summer. KCSN members have been very busy over the summer months, and we have a lot of news to share about KCSN activities, fundraising, World Kidney Cancer Day and new treatments. Please read on, and get in touch with us if you would like to get involved.

KCSN grows from strength to strength!

We welcome our 1000th member to the Facebook group!

Our Facebook groups are managed by the patients or carers themselves; this is a very special community of patients and carers who truly understand what it is like living with the emotional and physical effects of kidney cancer. Every member of our confidential KCSN support group on Facebook has had his or her life changed by kidney cancer, and are patients, carers or close family members.

Although this news is bitter-sweet, since it highlights the rise in the number of people affected by kidney cancer, it is also a comfort to those people who use the KCSN support groups on Facebook for mutual support and information.

For more information about the KCSN support groups on Facebook, please visit KCSN on Facebook.

A very big THANK YOU to all our fundraisers!

Our fundraisers have again been extremely busy over the summer months. We would like to thank them enormously for all their efforts raising much needed funds to help us to help you. We would also like to thank all those who donate regularly each month and for raising funds in lieu of birthday and anniversary gifts - your support is very much appreciated!

  • In July, Moira MacKay (right) took up the huge challenge to walk up Ben Nevis in support of her friend, Eleanor Cheshire, whilst raising funds for KCSN
  • In September, Charlotte Forster completed the mammoth Thames Path Challenge and walked 50 km in support of her husband Andy, who has kidney cancer
  • In June, Legal and General employees wore green to work and raised funds for KCSN through a cake sale and raffle
  • A very big THANK YOU to Women on the Move Against Cancer (WOMAC) who have raised a fantastic £15,000 through a charity auction, raffle, and ball at the Kia Oval

Together we can make a real difference!

There are lots of ways you can help us to help others. Fundraising can really make a difference to our work as a charity by helping to raise the profile of kidney cancer, which may ultimately help save lives. Fundraising events are a fun way to donate; however, if you don't have the time to organise an event, there are easier ways to support us:

  • one-off or a regular donation to help us fund a particular project
  • easyfundraising.org.uk enables you to raise money while shopping online at no cost to yourself
  • Facebook donations by clicking on the donate button on our Facebook pages
  • Matching gifts
  • Donations in memory of a loved one
  • Corporate support and grants
If you or your family or friends would like to organise or be involved in a KCSN fundraising event, please get in touch with us. Alternatively, you may like to consider making a special one-off or a regular donation to help us fund a particular project; either way we would love to hear from you. See Support Us on our website for more information.

Other ways to GET INVOLVED!

If fundraising isn't your thing, there are lots of other ways you can help us to help others:

Volunteering can be very rewarding and is a great way to meet people and find new friends. Get in touch with us; we would love to hear from you and let’s get together and make a real difference!

Welcome to our new Trustee

Join us in welcoming our new Trustee, Jonathan Pym, to the charity. 

Jon was diagnosed with kidney cancer in 2006 and, having had his kidney removed, metastases showed up in his lungs two years later. A journey through systemic treatment, enhancing his immune system, various surgeries, and latterly the latest stereotactic radiotherapy to deal with brain metastases, Jon remains on the surface fit and active and keen to give hope to anyone finding themselves facing a future with cancer.

Jon lives in Warwickshire, and is a qualified accountant and a trustee of the Citizen’s Advice Bureau in Oxford. Meet our Trustees on our website.

KCSN members getting involved!

            

Many congratulations to Alison Fielding and Salena Mulhere, the new patient representatives on the Bladder and Renal Clinical Studies Group (CSG) at the National Cancer Research Institute (NCRI), which manages research into bladder and renal cancers. We are very lucky to have found two such wonderful people who are willing to volunteer their time to speak up for us all in this very important forum. 

We are also sad to see the departure of Rose Woodward from the Bladder and Renal CSG and the surgical trials subgroup; Rose has been a patient representative for the past 10 years, and is the longest-standing patient representative across all NCRI CSGs! A wonderful achievement! I am sure you will join me in thanking Rose for her unwavering enthusiasm, energy and commitment to helping further kidney cancer research in this country, and to wish her all the best for the future. THANK YOU Rose!

Read more about the NCRI Bladder & Renal CSG here

We were extremely honoured to have one of our members, Jon Birchall, be invited to talk to over 20,000 Bristol-Myers Squibb employees about his experience of kidney cancer during their annual Global Patient Week, which, for the first time, was held at their UK headquarters in Uxbridge. A short video about Jon's kidney cancer experience was shown first, followed by Jon's presentation via video-link to BMS offices around the world. Jon's talk was warmly received by employees in the Uxbridge office. 

Click here to read more about Jon's visit to BMS

KCSN members organised a get-together over coffee at The Christie Hospital in Manchester during September. If you or a loved one would like to reach out to other families affected by kidney cancer, please get in touch with Julia and we will try to organise a similar event in your region.

KCSN has been working hard to improve access to new medicines. To compliment our work with the National Institute for Health and Care Excellence (NICE) on health technology appraisals, KCSN are members of Patients Involved in NICE (PIN). PIN is a coalition of over 80 patient organisations who work together to enable patient groups to actively and productively engage with NICE. They work alongside NICE's Public Involvement Programme to provide a forum to enable patient groups to engage with NICE and to shape various aspects of NICE's work.

Click here to read about the latest PIN meeting

KCSN is also a member of the Access to Cancer Medicines Coalition (ACMC), which brings together 24 cancer charities and patient groups to ensure cancer patients have timely access to the most clinically effective medicines for their condition on the NHS.

Click here to read about the latest ACMC meeting

KCSN also attended the NICE Conference in Manchester during the summer to learn about the latest developments in clinical improvement, health technologies, patient-centred care, patient empowerment, digital technology and the use of real world evidence in the NHS. 

Click here to read about the NICE conference

The second World Kidney Cancer Day (WKCD) took place on Thursday 21 June, and helped to improve awareness of the signs and symptoms of kidney cancer, both nationally and internationally. 

KCSN led the promotional activities in the UK and was instrumental in building awareness of the day, with Ambassadors, press releases, fundraising events, a social media campaign, and patient interviews. Our media campaign reached nearly 1.5 million people via print, online, radio and social media publications - a fantastic achievement by everyone involved!

World Kidney Cancer Day has not only helped to raise awareness of this devastating disease on a global basis, but has also helped to highlight the valuable work of the KCSN. It has also helped to raise some much needed funds - a BIG THANK YOU to all involved!

Click here to read the 2nd WKCD report

STOP PRESS!

CARMENA
The results from CARMENA, a randomised phase III clinical trial to assess the importance of surgery to remove the kidney (nephrectomy) in people with metastatic kidney cancer, showed that many people with metastatic disease can avoid nephrectomy without compromising survival. The median overall survival for people who received only sunitinib (a targeted therapy) was 18.4 months, compared to 13.9 months for those who received surgery followed by sunitinib, the current standard of care.

Read more here
Ipi/nivo combination

Many of you will have heard the disappointing news that the ipilimumab-nivolumab combination has been declined a license by the European Medicines Agency (EMA) for the first-line treatment of metastatic renal cell carcinoma (RCC). Bristol-Myers Squibb (BMS), the manufacturers of both ipilimimab and nivolumab, are re-examining the data, which we hope will prove the benefit of the combination treatment. 

This puts European kidney cancer patients at a disadvantage, particularly when the combination treatment has been proven to be superior to sunitinib in terms of response rates and is already available for use in the USA. The International Kidney Cancer Coalition (IKCC) and the European Association of Urology (EAU) have released a joint statement in response to the the EMA's negative opinion.

KCSN is a key stakeholder in the NICE appraisal for the ipilimumab-nivolumab combination, which has been suspended until BMS have been granted a product license.

We will, of course, keep you updated with any further information we receive about this drug combination.

Read more here
First-line cabozantinib

In August, we received the fantastic news that cabozantinib (Cabometyx) is recommended by NICE as a new first-line treatment option for people with intermediate- or poor-risk advanced renal cell carcinoma (RCC) for use within NHS England and Wales. Because of its multi-targeted approach, cabozantinib will likely have additional benefits for some groups of patients, particularly those with bone metastases. The recommendation of cabozantinib for use within NHS England and Wales is, therefore, fantastic news for this group of patients, and is a welcome addition to the arsenal of drugs now available to clinicians for the first-line treatment of advanced kidney cancer.

However, this week we received the news that first-line cabozantinib has been declined by the Scottish Medicines Consortium (SMC), and is currently not available to patients in Scotland. This decision demonstrates the fragmented approach to reviewing cancer medicines in the UK. We will, of course, be appealing this decision and will keep you informed of our progress.

Read more here






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Action Kidney Cancer · Action Kidney Cancer, 11th Floor · 3 Piccadilly Place · Manchester, M1 3BN · United Kingdom

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