GET INVOLVED with the KCSN!
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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; 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.
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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Other ways to get involved
If fundraising isn't your thing, there are lots of other ways you can help us to help others, such as volunteering, joining the KCSN support groups on Facebook, writing your kidney cancer story or a help sheet, or becoming a patient advocate for KCSN. There is more information about how to get involved and make a real difference on our website.
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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!
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World Kidney Cancer Day 2019
On 20 June 2019, patients, friends, carers, health professionals, researchers and local kidney cancer organisations around the world celebrated the third World Kidney Cancer Day. The 2019 theme, ‘We need to talk’, highlighted the urgent need for more awareness and action on kidney cancer around the globe.
Central to World Kidney Cancer Day 2019 was the report from a landmark Global Patient Survey, which interviewed almost 2,000 patients and carers from 43 countries. The results of the survey will start many conversations about global kidney cancer care.
The 2019 World Kidney Cancer Day campaign included online and offline video content from 25 of the world’s leading kidney cancer experts, plus a True or False online quiz.
Read the World Kidney Cancer Day campaign report 2019 here.
Thank you to everyone who took part in World Kidney Cancer Day 2019, and for helping to raise awareness and supporting patient advocacy and research to reduce the global burden of kidney cancer!
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The staff at Basildon Hospital organised a Coffee and Cakes Afternoon Event on Thursday 20th June 2019 to celebrate World Kidney Cancer Day. Around 40 patients, carers and families attended the event.
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Carl Amoscato and Sharon Kell visited Eisai, one of the leading pharmaceutical companies pioneering new treatments to fight kidney cancer. During their visit they took part in a staff Lunch and Learn meeting, including a tombola, raffle and photo booth in aid of World Kidney Cancer Day.
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A very big THANK YOU to all our fundraisers!
A very big THANK YOU for the fantastic efforts of our fundraisers over the summer - your support is very much appreciated by everyone in the KCSN community! This summer has seen many donations to KCSN, from those who donate regularly each month, those who raise funds in lieu of birthday and anniversary gifts, fundraising events big and small, and those who have kindly donated funds in memory of a loved one - we are all extremely grateful!
Here are some of the exciting events that took place over the summer to raise much needed funds for KCSN. Thank you to everyone who organised and took part in these events on behalf of KCSN:
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Great Knaresborough Bed Race
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Bloodwise Blenheim Palace Triathlon
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Camino to Santiago walk
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Juliet Burns Golf Day Memorial Cup
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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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KCSN members getting involved
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Sharon Kell attended the Developments in Data for Rare and Less Common Cancers conference organised by Cancer52 in collaboration with Public Health England (PHE) on 22nd May 2019. The aim of the conference was to highlight the importance of data for rare and less common cancers.
There were presentations about the collection, analysis and use of cancer data, the Accelerate, Coordinate, Evaluate (ACE) programme for early diagnosis of cancer, and the use of rare and less common cancer data to increase awareness and identify unmet needs. These discussion took place in the context of the NHS Long Term Plan.
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At a recent meeting of the Access to Cancer Medicines Coalition (ACMC) on 24th June, the group was joined by two external speakers from the National Institute for Health and Care Excellence (NICE) and NHS England: Heidi Livingstone, Senior Public Involvement Advisor from NICE, spoke about the forthcoming changes to NICE’s processes and methods to improve meaningful patient/public involvement in health technology appraisals for new medicines. Rob Fernley, Cancer Drugs Fund (CDF), NHS England gave an update on the progress of the new CDF since its inception in July 2016.
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Results from the IKCC Global Patient Survey have been published in the journal Cure online. 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.
Read more in Cure here
In May this year, the US Food and Drug Administration (FDA) approved avelumab in combination with axitinib for first-line treatment of advanced renal cell carcinoma (RCC).
Approval was based on the results from the JAVELIN Renal 101 trial of avelumab plus axitinib in 886 patients with untreated advanced RCC. Progression-free survival (PFS) was significantly improved with the combination, with median PFS of 13.8 months for patients on avelumab plus axitinib and 8.4 months for patients on sunitinib. Overall survival data were immature.
Read more on the FDA website here
The pembrolizumab plus axitinib combination has been approved by the European Commission (EC) for first-line treatment of advanced RCC. The approval is based on the results from the open-label KEYNOTE-426 study involving 861 patients, where there was a 47% reduction in the risk of death in patients taking the combination compared to sunitinib. Survival benefits were irrespective of PD-L1 status or risk group. Safety and tolerability were comparable between the two treatment groups. The approval allows marketing of the combination in all 28 EU member states plus Iceland, Lichtenstein and Norway.
Read more in Yahoo! Finance here
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The American Society of Clinical Oncology Symposium (ASCO) annual conference was held in Chicago, USA in June 2019, and was attended by over 40,000 cancer researchers, clinicians, patient advocates and others. The use of combination treatments for advanced renal cell carcinoma (RCC) continues to be a huge area of research, and can also be used for the treatment of patients with sarcomatoid RCC and brain metastases. In addition, there were presentations about the quality of life of patients treated with immunotherapy and the use of pazopanib for patients who have had surgery to remove metastases.
Sarcomatoid RCC
Three papers presented at the meeting described findings from the treatment of sarcomatoid RCC with combinations of immune checkpoint inhibitors; pembrolizumab plus axitinib, atezolizumab plus bevacizumab, and ipilimumab plus nivolumab respectively. Around 10-20% of patients with advanced RCC are thought to have sarcomatoid histology. Tumours with sarcomatoid histology have a limited response to targeted therapies. Sarcomatoid histology is predominantly found in stage IV tumours, and is a predictor of poor survival. However, this summary presents data to show improved outcomes following treatment with immune checkpoint inhibitors, good news for these patient who currently have limited treatment options.
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Treatment following surgery to remove metastases
In this phase III study, the use of pazopanib after surgery to remove RCC metastases (metastasectomy) was investigated. One hundred and twenty-nine patients with no evidence of disease after surgery to remove RCC metastases were randomised to receive pazopanib or placebo for 52 weeks to determine the effects on disease-free survival. Unfortunately, this study did not show any benefit to receiving treatment with pazopanib for one year following metastasectomy, and there was no improvement in disease-free survival in these patients.
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Quality of life
One study looked at quality of life with atezolizumab with and without bevacizumab compared to sunitinib in the IMmotion 150 study. Both atezolizumab and atezolizumab plus bevacizumab were better tolerated than sunitinib. Another study looked at long-term quality of life (4 years) for melanoma patients taking first-line nivolumab with or without ipilimumab. Patient-reported outcomes were collected from 945 patients, and the study concluded that long-term quality of life was maintained during and after treatment with nivolumab +/- ipilimumab. This is of interest to kidney cancer patients who will hopefully experience similar results.
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Management of brain metastases
A small study looked at the management of brain metastases, which is an ongoing major dilemma in patients with kidney cancer, particularly for patients with multiple metastases that can't be treated with focused beam radiation (e.g., Gamma knife or stereotactic radiosurgery). These patients face whole brain radiation, which is neither very effective nor well tolerated. Additionally, patients with untreated brain metastases are excluded from many clinical trials, so we have little information on how well their brain metastases respond to newer treatment. In this study, 28 patients with brain metastases were treated with ipilimumab plus nivolumab. The response rates were around 30%, and the treatment was well tolerated. These data are encouraging for kidney cancer patients with brain metastases, although further work needs to be done.
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