Best wishes for Christmas and the New Year!
Welcome to our last newsletter for 2019. We hope you have had a good year and we would like to wish you all the best for the festive season. 2019 has been a busy year for KCSN members, with our exciting new video project coming soon to the website, numerous applications to NICE and the Scottish Medicines Consortium (SMC), World Kidney Cancer Day, various cancer conferences, and some very successful fundraising events. We hope you enjoy hearing about the work we do to support our community! If you have any suggestions for our newsletter, we would love to hear from you, so please get in touch.
Support over the Christmas holidays
Christmas can be a difficult time for some people. If you are struggling, please remember you can always find someone to talk to within the KCSN community. Our Facebook groups are available 24 hours a day, 7 days a week. There are over 1,000 patients, carers and family members active at all times of day and night in our groups, which are managed by the patients or carers themselves; this is a very special community who truly understand what it is like living with the emotional and physical effects of kidney cancer. This can be a comfort if you need support and information over the Christmas holidays.
For more information about the KCSN support groups on Facebook, please visit KCSN on Facebook.
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A very big THANK YOU!
This year, our fundraisers have been especially busy, running, walking, cycling, baking and entertaining to raise much needed funds for our charity. We would like to say a very big THANK YOU for the fantastic efforts of our fundraisers during 2019 - your support has helped us to help others affected by this terrible disease! We are extremely grateful for all the donations made to the KCSN, big or small they all make a difference.
Here are the highlights of some of the exciting events that took place this year, including the Lavender Ball, Juliet Burns Golf Day Memorial Cup, Blenheim Palace Triathlon, Great Knaresborough Bed Race and The Chiltern Challenge hike. Read more about these exciting fundraising events on our website. Thank you to everyone who organised and took part in these events on behalf of KCSN:
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GET INVOLVED with the KCSN!
If fundraising isn't your thing, there are lots of other ways you can get involved to help raise the profile of kidney cancer. Building awareness of this devastating disease puts kidney cancer in the minds of NHS policy makers and the general public, and may ultimately help save lives. There is a lot of information about how to get involved and make a real difference on our website. You can help us to help others by volunteering, joining the KCSN support groups on Facebook, writing your kidney cancer story or a help sheet, or becoming a patient advocate for KCSN.
Fundraising events are a fun way to donate; if you would like more information about how to organise or be involved in a KCSN fundraising event, please get in touch with us. If you don't have the time to organise an event, there are easier ways to support us. You may like to consider making a special one-off or a regular donation to help us fund a particular project. Visit the Support Us page on our website for a list of easy ways to donate.
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KCSN is registered with the Fundraising Regulator and abides by the Code of Fundraising Practice, which outlines the standards expected of all charitable fundraising organisations across the UK.
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Steve Pointon attended a workshop in October organised by National Voices on behalf of the National Institute for Health Research (NIHR) to investigate what is important to people of working age when suffering from multiple long-term conditions.
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Over a quarter of people in England live with two or more long-term conditions, and the numbers are expected to keep rising. The main aim of the workshop was to identify next priorities. Key areas of discussion where communication within the NHS, better information on initial diagnosis, where to get support, financial implications of long-term conditions, and psychological support and counselling.
Read Steve's report on our website here
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In September, Sharon Kell attended the annual Experimental Cancer Medicine Demystified event held at Cancer Research UK Cambridge Institute on the University of Cambridge Addenbrooke’s campus.
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This is the second year that this event has taken place, and it was open to researchers, nurses, health professionals, cancer patients and patient representatives.
The day featured talks about personalised medicine, immunotherapy, research into treatments for kidney, blood, ovarian and brain cancer, and an update from the Cambridge Experimental Cancer Medicine Patient and Public Involvement (PPI) group.
Read Sharon's report on our website here
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Sharon also attended the Cancer52 All Members Meeting in October with updates about the NHS Long Term Plan from David Fitzgerald, National Cancer Programme Director at NHS England, and NICE reviews of methods and processes.
Read more about the NHS Long Term Plan here
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Along with 28 other charities, KCSN released a joint manifesto calling on the new Government to improve prevention, diagnosis, treatment and care. With 1 in 2 people in the UK diagnosed with cancer at some point in their lifetime, government action could improve millions of lives and touch every family in the country.
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Our joint cancer manifesto, One Cancer Voice, calls the Government to task on items such as NHS workforce, early diagnosis, access to treatment and psychological support, financial distress of patients and families, research, prevention of cancer, post-treatment issues, and social care.
Read the One Cancer Voice manifesto here: One Cancer Voice – Final (1.0)
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From L to R: Daniel Kell (work experience), Debbie Victor, Rose Woodward, Julia Black, Sharon Kell, Andy Thomas
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At the invitation of one of our trustees, Dr Samra Turajlic, the last KCSN Trustee Meeting was held at the Francis Crick Institute in London, where Dr Turajlic is researching cancer evolution. The Francis Crick Institute is a biomedical research centre in London, opened in 2016. The impressive building is shaped like a chromosome!
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In October this year, the European Commission (EC) approved avelumab in combination with axitinib for first-line treatment of patients with advanced renal cell carcinoma (RCC). This is the third combination approved for untreated RCC, and joins ipilimumab/nivolumab and pembrolizumab/axitinib as a choice for first-line treatments. The approval allows marketing of the avelumab plus axitinib combination in all 28 EU member states plus Iceland, Lichtenstein and Norway.
Read more on Merck's website here
Both the avelumab/axitinib and pembrolizumab/axitinib combinations are currently undergoing NICE appraisal for first-line treatment of advanced RCC. The appraisal meetings are in January 2020 and we expect to hear the outcome of these meetings in the Spring. Scottish Medicine Consortium (SMC) appraisals for these combinations will be taking place next Spring/Summer.
The lenvatinib plus everolimus combination was approved by the SMC for second-line treatment of advanced RCC last month, and will be available for use within NHS Scotland in the new year. This combination is already available for second-line treatment of advanced RCC within the NHS in England and Wales.
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The European Society of Medical Oncology (ESMO) annual conference was held in Barcelona, Spain from 27 September to 1 October 2019, and was attended by over 28,000 cancer researchers, clinicians, patient advocates and others. ESMO is Europe's leading medical oncology society, providing a professional network for its members and working with national societies across Europe.
Highlights from the meeting included the results from the TITAN RCC clinical trial investigating a tailored approach to immunotherapy treatment, the SORCE clinical trial of adjuvant sorafenib, and new drug treatments for RCC and sarcomatoid kidney cancer. Results from the International Kidney Cancer Coalition (IKCC) patient survey were also presented.
Read kidney cancer highlights from the ESMO conference on the IKCC website
IKCC Global Patient Survey
Almost 2,000 patients and carers from 43 countries participated in the 2018 survey. The results of the survey will be used to determine unmet patients needs around the world and to develop solutions to patient issues.
Watch a video of the ESMO presentation here
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