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Issue 4 - December 2018
Best wishes for Christmas and the New Year!
Welcome to our last newsletter for 2018. We hope you have had a good year and we would like to wish you all the best for the festive season. 2018 has been a busy year for KCSN members, and we hope you have enjoyed hearing about the work we do to help support our community! If you have any suggestions for our newsletter, we would love to hear from you, so please get in touch.
Support is available over the Christmas holidays
Christmas can be a difficult time for some people. If you are struggling, please remember that as part of the KCSN community you can always find someone to talk to. 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.

A very big THANK YOU to all our fundraisers!

We would like to say a very big THANK YOU to everyone who has supported KCSN with fundraising this year. There have been some very dedicated people raising funds throughout 2018, and we would like to thank them enormously for all their efforts. For those who donate regularly each month, those who raise funds in lieu of birthday and anniversary gifts, and those who have kindly donated funds in memory of a loved one - your support is very much appreciated!
 
We are grateful to the following fundraisers this month:

During December, the Verwood Concert Brass Band are performing a series of concerts whilst raising funds for KCSN in support of one of its members, who was diagnosed with kidney cancer
In December, the Victoria Kigozi Foundation hosted a talent night and made a donation to KCSN. The Victoria Kigozi Foundation was set-up in memory of the premature loss of Vicky from kidney cancer. The aim of the Foundation is to raise awareness and provide support to young people with the disease.
Thank you to everyone who has set up a fundraiser in lieu of birthdays and anniversaries using the Facebook donate button (see below). Such as Gemma Shoebridge who used the donate button to raise funds in celebration of her birthday and 10 years surviving kidney cancer! 

New ways to support us! 

There are a number of ways you can donate to the KCSN and help us to help others. Since we do not receive any funds from the government, your donations can really make a difference to our work as a charity by enabling us to provide the support needed to our community. We have highlighted a few easy ways to support us on our website:

  • AmazonSmile donates 0.5% of the net purchase price to a charity of your choice without costing you a penny. Support us by starting your shopping at smile.amazon.co.uk.
  • easyfundraising.org.uk enables you to raise money while shopping online at hundreds of retailers at no cost to yourself
  • The Facebook donate button can be added to your Facebook posts to help us collect donations and enable our supporters to fundraise on our behalf. When you are posting in the KSCN Facebook group, simply add the Facebook donate button to your post to enable our followers to contribute directly through Facebook.
If you would like further information about these easy ways to support us, or you would like to organise or be involved in a KCSN fundraising event, please get in touch with us. See Support Us on our website for more information.

For those of you who dread writing Christmas cards, why not set up a fundraiser for KCSN on your Facebook page and ask your Facebook friends to donate what they would have spent on a card instead? How to make a donation

KCSN members getting involved!

            

Salena Mulhere was lucky enough to be awarded a bursary by Cancer52 to attend the Britain Against Cancer conference in December.

This year, the conference focused on the future priorities for cancer care and support in NHS England and also marks the 20th anniversary of the All Party Parliamentary Group on Cancer (APPGC), the organisers of the conference. During the conference, we heard from leaders from across the health policy landscape, including Cally Palmer, National Cancer Director, Jonathan Ashworth, Shadow Secretary of State for Health and Social Care, and Lynda Thomas, Chief Executive of Macmillan Cancer Support, as well as the cancer patients themselves, including Nick Robinson, presenter of the BBC Today programme.   

Read Salena's report from the BAC conference here

The annual Cancer52 stakeholder briefing took place on 17th October, and Sharon Kell represented KCSN at the meeting. The keynote speaker was Cally Palmer, National Cancer Director, who gave an update on the accomplishments of the current cancer strategy and what to expect in the new NHS England Long Term Plan, 2020-2030.

KCSN contributed to the consultation on the NHS England Long Term Plan, which closed in September. The plan is expected to be published later this month.

Click here to read about the Cancer52 stakeholder briefing

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. This month, the ACMC heard from Brad Groves from NHS England about the various routes to access cancer medicines, and Jemma Dilkes from the National Institute for Health and Care Excellence (NICE) about the new technical engagement step in the NICE technology appraisal process.

Click here to read about the latest ACMC meeting

Through the International Kidney Cancer Coalition, Julia Black was able to attend this year's European Society of Medical Oncology (ESMO) congress in Munich, Germany during October. ESMO is Europe's leading medical oncology society, providing a professional network for its members and working with national societies across Europe. 

This year's congress focused on securing better patient outcomes through high quality care. The congress provided a multi-professional platform for oncology education and scientific research. Highlights from the meeting included presentation of the results from the JAVELIN Renal 101 clinical trial comparing the combination of avelumab and axitinib with sunitinib, and the cabozantinib plus atezolizumab combination for metastatic RCC (see below).

Click here to read about the ESMO congress

STOP PRESS!

Ipi/nivo combination

Subsequent to the disappointing news that the ipilimumab-nivolumab combination had been declined a license by the European Medicines Agency (EMA) for the first-line treatment of metastatic renal cell carcinoma (RCC), the Committee for Medicinal Products for Human Use (CHMP), the scientific committee of the EMA has reneged on its decision following a successful appeal by Bristol-Myers Squibb (BMS), the manufacturer of both ipilimumab and nivolumab.

KCSN represented the patient voice on behalf of kidney cancer patients across Europe during re-examination of the data by the CHMP Scientific Advisory Group.

NICE will resume appraisal of the ipilimumab-nivolumab combination this month, with a committee meeting scheduled for January 2019. KCSN is a key stakeholder in this NICE appraisal. We will, of course, keep you updated with any further information we receive about this drug combination.

Read more here

JAVELIN Renal 101

Results from the JAVELIN Renal 101 phase 3 study to assess a combination of avelumab (Bavencio) and axitinib (Inlyta) versus sunitinib (Sutent) as first-line treatment for advanced renal cell carcinoma (RCC) were presented at the ESMO 2018 congress in Munich in October.

Avelumab is a PD-L1 checkpoint inhibitor and axitinib is a potent vascular endothelial growth factor (VEGF) tyrosine kinase inhibitor (TKI), currently approved in the second line for advanced RCC.

A total of 886 patients were randomly assigned to receive either sunitinib (444 patients) or the combination of avelumab + axitinib (442 patients).

The combination of avelumab + axitinib significantly improved median progression-free survival (PFS) in patients who were PD-L1 positive (13.8 months for the combination vs 7.2 months for sunitinib). Avelumab + axitinib also improved PFS in the overall population (13.8 months for the combination vs 8.4 months for sunitinib).

Read more here

Cabozantinib plus atezolizumab combination

Results from the phase 1b COSMIC-021 study of cabozantinib in combination with atezolizumab in people with previously untreated advanced renal cell carcinoma (RCC) were presented at the ESMO 2018 congress in Munich in October.

This dose-escalation study primarily looked at the safety of the cabozantinib + atezolizumab combination in untreated advanced RCC patients to determine the best dose to use in future clinical trials. The combination showed encouraging clinical activity in this group of patients, with a response rate of 67% and a disease control rate of 100% (although the numbers of patients were small).

Read more here
First-line cabozantinib

Further to the news that first-line cabozantinib has been declined by the Scottish Medicines Consortium (SMC), cabozantinib will be re-appraised by the SMC in January 2019. We will, of course, keep you informed of the outcome of this appraisal.







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