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Launching Wednesday 7 October 2020

Last autumn we embarked on a very exciting project to film patients and carers talking about their experiences with kidney cancer. This project will be launched our website next Wednesday 7 October. Some of the topics include:

Talking about kidney cancer
Coping with a diagnosis of kidney cancer
What you can expect after a nephrectomy
Managing your kidney cancer treatment
Living with early stage kidney cancer
Biopsy results

There is a YouTube channel for all the videos in the series and you will be able to access them from the KCSN website Patient Support/Patients, in our own words. These channels will become active on Wednesday 7 October. We will also be adding to the series next year. We will be letting you know when the videos become available via Twitter and Facebook.

KCSN Research Projects

The NOTION Project

NOTION is a research study to develop an early detection system that aims to help future patients with the side effects of immunotherapy. Information from medical records will be used for the research study and for future research.

Many patients who receive immunotherapy experience side effects. If these can be detected earlier, doctors can help patients manage these side effects and cope better with their treatment. This means potentially staying on the treatment for longer. The study aims to detect these side effects early by measuring a protein in blood (called a ‘cytokine’) that is released by the immune system to help fight cancer.

KCSN, in particular Steve Pointon and Rose Woodward, have been involved in the development of a patient information sheet for the research study. We would like to thank all those patients who also contributed their opinions which resulted in patient-friendly supportive trial literature.

The NOTION study is being conducted at the Christie Hospital in Manchester by the Digital Experimental Cancer Medicine Team. Here is what they said about KCSN’s involvement:

“As a research group it is vital we have input from the general public and patients around our projects, to ensure that we are always designing our trials for them. The KCSN were incredibly helpful and turned around a patient involvement discussion within a few weeks. The group were completely engaged, thoughtful, considered and generous with their feedback, which will shape the way our trial supportive literature looks. It was an absolute pleasure and we are very grateful to Steve and the participants for their contribution. We look forward to engaging in this way again.”

Read more about the Digital Experimental Cancer Medicine Team here

World Kidney Cancer Day 2020

On 18 June 2020, patients, friends, carers, health professionals, researchers and local kidney cancer organisations around the world celebrated the fourth World Kidney Cancer Day. This year's theme was ‘We need to talk about physical activity’.

Globally, the World Kidney Cancer Day YouTube campaign delivered over 2 million impressions with over 1 million completed views over the 4 weeks of the campaign. Also, 4,477 users clicked through to the IKCC World Kidney Cancer Day website.

You can read the full IKCC World Kidney Cancer Day 2020 campaign report here and the KCSN report on our website here.

Thank you to everyone who took part in World Kidney Cancer Day 2020 to raise awareness of the importance of physical activity and kidney cancer!

Next year, World Kidney Cancer Day will be on Thursday 17th June. We look forward to working with you on our 2021 campaign.

Returning to a 'normal' life

The global COVID-19 pandemic remains of great concern to many cancer patients; screening and diagnoses have been delayed, treatments disrupted and clinical trials put on indefinite hold. This is confounded by the extra stress and anxiety put upon cancer patients already living with a life-limiting condition, and the fear and constant worry of coming out of lockdown and returning to what is considered a ‘normal’ life.

Because the risk and spread of COVID-19 varies considerably between individual devolved countries, individual patients and even certain areas of the country, we recommend that you follow your local Government advice to keep safe and curb the spread of this disease.

Please see the KCSN Coronavirus: Advice for cancer patients for reliable information about COVID-19.

If you would like to know what is being done on a global scale, the International Kidney Cancer Consortium (IKCC) has also released a Global Alliance Joint Statement on COVID-19 on their website. This is a collaboration with 7 other global cancer coalitions and alliances, representing 650 cancer patient organisations around the world to jointly call for a global plan of action.

Clinical trials

Some clinical trials are starting to see patients again, although progress is slow and some trials have had to be modified to ensure they can continue. Innovative techniques to assess patients, such as telemedicine and virtual patient assessments are being used to reduce infection rates amongst advanced cancer patients who are vulnerable to infection. However, many hospitals are still struggling with staff shortages and social distancing measures.

Click & Chat

Please join our Click & Chat sessions held by Steve Pointon, our Community Development Officer, every couple of weeks. This is a great opportunity to make new friends, share experiences, or join in with a quiz! Each session lasts about an hour, and is a great way feel supported by others going through similar experiences and to feel less isolated. Please see our Facebook page for the date of the next session. We look forward to you joining us! For more information, please email steve@kcsn.org.uk

A very big THANK YOU!

Charity fundraising has been hit very hard by the COVID-19 pandemic. Thousands of fundraising events have been cancelled and many charities, particularly smaller ones, are struggling to maintain services. We are extremely grateful for all the virtual fundraising events that have been taking place over the past few months and for all the donations made to the KCSN, big or small they all make a difference. We would like to say a very big THANK YOU for these fantastic efforts!

One of the biggest fundraising events for KCSN this summer was Jack and Phil's virtual triathlon. A huge thank you to everyone who donated. So far, the triathlon has raised a large amount of money for KCSN, which is amazing. Thank you to everyone who came out and supported Jack and Phil - they were completely blown away by the people cheering them on, which gave them a great boost. It was quite humbling to see so many people clapping and smiling at the finish. Thank you also to Jenni and Evelyn for all their help both on the day but also leading up to it. There is still time to donate here if you haven't already.

Please take a look at our fundraising page for future fundraising events and other ways you can donate to the KCSN which will help us offer support to many more kidney cancer patients and their families.

KCSN advocacy work

During the COVID-19 pandemic KCSN has joined together with other cancer charities to provide useful information for cancer patients to help protect them during the pandemic. We have also been lobbying the Government for the restoration and recovery of safe and effective cancer services throughout the UK as members of the Once Cancer Voice, Cancer Research UK and Cancer52 group of charities.

Since the beginning of the year, KCSN has submitted responses to two RCC treatment appraisals: avelumab plus axitinib and pembrolizumab plus axitinib for the first-line treatment of metastatic RCC. Both appraisal meetings were held in January this year.

The avelumab/axitinib combination has been accepted for use via the Cancer Drugs Fund and is now available to NHS patients in England and Wales. However, after two appraisal meetings, the pembrolizumab/axitinib combination has unfortunately been declined following an appeal.

The SMC Patient and Clinician Engagement (PACE) meetings for the avelumab/axitinib and pembrolizumab/axitinib combinations took place just before lockdown. The pembrolizumab/axitinib combination has been accepted for use within NHS Scotland for the first-line treatment of metastatic RCC.

Rose Woodward, Founder of KCSN and a patient herself, said; “This is fantastic news from the Scottish Medicines Consortium that kidney cancer patients in Scotland will now have access to this innovative and clinically effective drug combination fully funded by the Scottish Government. But we know the heartache this will cause patients and their families in England and Wales who have been told the same treatment will not be funded by the NHS for them. Cancer patients need consistency from the regulatory bodies in the UK. All kidney cancer patients must be treated equally and given access to the latest most effective treatments.”

We await the committee's decision regarding the avelumab/axitinib combination, the appraisal for which was held virtually on 1 September 2020.

If you have any questions about this news, please get in touch with Rose or Karen at the KCSN.

European Society of Medical Oncology (ESMO)

As a result of the COVID-19 pandemic, this year's European Society of Medical Oncology (ESMO) congress was held virtually from 19-21 September 2020.

The past couple of years have been watershed years for kidney cancer, due to the approval of multiple new drugs and drug combinations for untreated patients (first-line). Presentations at ESMO 2020 consolidated our understanding of the long-term action of some of these drugs, particularly when used in combination. Highlights included the long-awaited data from a new combination of an immunotherapy drug and a targeted therapy, promising new drugs for non-clear cell renal cell carcinoma, and further information about biomarkers for kidney cancer treatment response and prognosis.

Read the full report on the IKCC website here: ESMO Highlights 2020