Kidney Cancer News Headlines

Last Updated 20th August 2009

New Survey highlights shockingly low public awareness of kidney cancer.

The findings of this survey coincide with the launch of a series of new films that aim to help increase awareness of this devastating disease. The main film entitled Kidney Cancer: Jane’s Journey, was commissioned by the James Whale Fund for Kidney Cancer and Kidney Cancer UK in co-sponsorship with Novartis Oncology, Red Health and Day For Night Films. The film highlights the personal journey of 50 year old Jane Thompson, a mother of three from Birmingham, who was diagnosed with advanced and incurable kidney cancer in 2007.
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KCUK’s Campaign and Petition for New Drugs

New for 2007 is the KCUK Campaign to lobby for NICE approval for two important new drugs.  Go to the new Campaign page on this site for latest news and information.  Ensure you follow the links on that page to

sign our online e-petition.

Appointment of new Trustee – Dr Pat Hanlon

The Board of Trustees are pleased to announce the appointment of Dr Pat Hanlon as a new Trustee of Kidney Cancer UK, with his appointment being effective from 13th February 2007. 

Pat’s decision to be part of KCUK comes from his personal experience of kidney cancer and he brings with him excellent skills and resources to the role of Trustee.  He will be heading the campaign strategy for the organisation to campaign for issues that are important to all those affected by kidney cancer.

NEW DRUGS TARGET ADVANCED KIDNEY CANCER

Pfizer's new drug Sutent and Bayer's Sorafenib may soon be available for UK kidney cancer patients

2006 and the Future of KCUK

At the annual meeting of the American Society of Clinical Oncology (ASCO), held in New Orleans in June 2004, a number of presentations indicated that significant progress is being made in the development of new treatments for advanced (metastatic) kidney cancer. New 'targeted therapies' have produced encouraging results in clinical trials. These include treatment with new drugs  SU011248, BAY 43-9006, Bevacizumab/Avastin and erlotinib/Tarceva. See http://www.asco.org for the 2004 conference reports, and further presentations at the 2005 conference. Further details are also provided in the KCUK News and Views magazine, No. 10, November 2004. 

Note: SU011248 is now known as Sutent; BAY 43-9006 is known as Sorafenib. See the next column to the left for the latest news on Sutent (24 August 2005).

 24 August 2005: Pfizer announced in New York that it will expand its access programme to the targeted therapy drug Sutent (SU011248) for kidney cancer patients. This will offer a new line of treatment for patients with secondary spread of disease who have not responded to prior immunotherapy. The first sites for treatment have already opened in the USA and Canada, and there should be sites in Europe and the rest of the world from August-September onwards. The activity of Sutent is based on its ability to 'starve' tumours of blood and nutrients needed for tumour growth, and to kill cancer cells. However, patients need to discuss with their specialist consultants the possible side effects of the drug, and any related risks and uncertainties. We are still waiting for details of where in the UK the drug will be available to patients, and of course we also need information on who will pay for the drug treatment.

14 September 2005: Bayer issued the following statement --

"Sorafenib is currently available in the United States to patients with advanced kidney cancer through a treatment protocol known as the Advanced Renal Cell Carcinoma Sorafenib (ARCCS) study. To be eligible, individuals may not have  been previously treated with sorafenib and should call 1-866-639- 2827. A similar trial will start in Europe shortly, and Bayer and Onyx are in discussions with regulators about similar programs in other territories."

 The sad loss of Keith Taylor at the start of 2006 had a huge impact on the day to day operation of KCUK, as Keith personally carried out so many of the organisation’s activities, in particular the helpline that he operated from his home, the website that he personally supervised, and the magazine of which he was editor. It has been extremely difficult to pick up where Keith left off with these and many other operational issues, and some tough decisions have had to be made with regard to the helpline, the magazine, and the annual conference for 2006. • Helpline – we have had to cease providing this service as it was not possible to provide a consistent and sustainable service. At the moment all enquiries are being directed to the CancerBackup helpline. • Insight Magazine – it has not been possible to produce an issue of the magazine during 2006 as all resources have been utilized in maintaining the day to day operation of KCUK and ensuring legal requirements are being met. We are planning to produce the next issue of the magazine early in 2007. • 2006 Annual Conference – It was decided at a meeting of the Board of Trustees in May that it was not practical to organize a conference in 2006 whilst so many other matters were of a higher priority to the organisation. It is intended to hold a conference in 2007 with the date and venue yet to be organized. • KCUK Website – It has been extremely difficulty in obtaining the access permissions to update the website, and the site has suffered from not being managed and updated. Unfortunately there have also been a significant amount of inappropriate material and links added to the website and forum during this time which have been offensive to users of the site. The Trustees have taken the decision to appoint an external organisation to provide maintenance and support of the website and to update and manage the site on our behalf to avoid problems of this nature occurring in the future and to regain control of our main source of communication with those affected by kidney cancer. The forum has been cleaned up of the inappropriate material and is being managed on a regular basis and the website content is in the process of being updated. The plans of the Trustees for the immediate future are that we will be concentrating on the magazine, regular meetings of the Trustees, and the website and patient forum. We are also intending to increase the number of Trustees to increase the resources available and strengthen the expertise of those involved with KCUK. The long term plans include, increasing the number of members, working on a joint information and helpline approach with CancerBackup, and collaborative working with KCA. The Trustees would like to thank the members for their support during this difficult time for KCUK.

 

Announcement from The Board of Trustees of KCUK

 Steve Dunn, kidney cancer hero, dies 19/8/05

KCUK research: GPs and the challenge of early diagnosis

It is with great sadness that I am writing to inform you that Keith Taylor has lost his battle with Kidney Cancer and passed away on January 2nd 2006.  As President of KCUK his work to help others with kidney cancer was tireless and relentless despite enduring many complications of the illness.  His work with KCUK will be sadly missed on both a personal and professional level and I am sure many of you who knew Keith personally will want to join us in passing on our condolences to his family.

As the new Chairperson of KCUK I would like to reassure all Members of our organisation that it is the intention of all the Trustees that KCUK continues to develop and improve its services to people with kidney cancer, their families and friends.  Since the appointment of our administrator last year, the organisation has improved in efficiency and professionalism, and with the experience of our Trustees I feel confident that we have a firm foundation for sustenance and growth over the coming years.  As Members you are all very important to KCUK and your continued support and involvement is greatly appreciated.  I would like to take this opportunity to thank all members who have volunteered their time and expertise to help with KCUK.

I would like to thank those of you who have responded so promptly with your membership renewals and ask for your patience and understanding if there is a slight delay in your receiving an acknowledgement.  We are working through them as quickly as possible and receipts will be sent you very soon.  We have had some problems accessing any post that has been addressed to the Registered office in Coventry but this is in the process of being resolved and I would ask you for your continued patience for the next few weeks.  Any future correspondence should be addressed to the Administrators address or the revised Registered Office address as listed below and will be dealt with as quickly as possible.

It is a tribute to Keith and everybody involved in the foundation of this charity that KCUK continues to represent the interests of people touched by kidney cancer.  The Trustees are committed to improving and developing KCUK.

On behalf of all the Trustees

Joan Thompson

Chairperson of KCUK

New Registered Office Address: 9 Foxhall Road, Timperley, Altrincham, WA15 6RW

 

 

 Steve Dunn, American pioneer of the provision of information for kidney cancer patients, battled successfully against stage 4 kidney cancer over a decade ago, and was declared disease free after immunotherapy treatment. He subsequently devoted his life to working on improving information sources for kidney cancer and doing his own meticulous research on the medical science of kidney cancer, and presenting his knowledge in patient-friendly form on his web site at http://cancerguide.org (Steve Dunn's Cancerguide). He also offered inspired personal guidance on the process of doing patient-centred cancer research.

Having survived kidney cancer, Steve was struck down by  an aggressive form of meningitis in October 2004. He was hospitalised for nearly a year, and sadly passed away on 19 August 2005, aged 48.

Many patients all over the world have been encouraged and have gained precious knowledge through Steve's work. His remarkable intellect and personal encouragement have literally saved lives and improved patients' quality of life. It is a human tragedy that he is no longer with us, but there are many others who will ensure that his legacy lives on and his Cancerguide is maintained as an extraordinarily valuable aid for patients and other kidney cancer researchers.

A web site is being set up so that messages of appreciation and condolence can be sent to create a memorial for Steve. Watch this space for further details.

    

KCUK is undertaking a survey of GPs to gather their views on the diagnosis of kidney cancer and the best ways of looking after patients at the primary care level. The aim is to help formulate a strategy for achieving earlier diagnosis of the disease, which must be a key aim in any attempt to improve the currently poor survival rates.

If you are a patient or carer, you can help us distribute our GPs questionnaire in your local area. Please contact us by e-mail (admin@kcuk.org) or phone 01889 565801.