Angels For Sue: Surviving Advanced Kidney Cancer

Action to Cure Kidney Cancer (www.ackc.org) is an excellent organization and one worth mentioning. The is a grassroots organization that is aimed at true advocacy for kidney cancer research and awareness. Recently, members of this organization (including one individual who is currently undergoing extremely aggressive treatment for advanced kidney cancer) met with executives at a major drug company to encourage them to continue research on another promising drug aimed at the treatment of advanced renal cell carcinoma. The drug company had previously announced that it wasn't planning to continue funding the research for this drug. This is just an example of the aggressive advocacy that this group undertakes. They keep the pulse on what is going on politically and on the research end of kidney cancer. I can't say enough about this wonderful organization.

I can't say enough about my new Kidney cancer "community" through the Association of  On-line Cancer Resources (ACOR), web address www.acor.org.  They answer any and all questions and provide tremendous support to one and other. They have these "communities" for all types of cancer not just kidney so please refer to anyone you know who might need this.

Another important link!

http://www.acor.org/

This is the link to the listserv - an on-line community of people affected by all types of cancer including Kidney Cancer. One is able to communicate in real-time with people all over the world going through the very same experience. Everyone is generous with their time and information on everything from new treatments to side effect to support groups - you name it!!

I spent some time this week really working with the Kidney Cancer Association link previously listed here. This is a phenomenal organization and a number one MUST READ for anyone with kidney cancer. This week, I've gone on the message board and started communicating with people all across the country who have been diagnosed with kidney cancer, many with the same form as my mom. It is so validating to find out that many are following the same course we are. There are many who are doing very well post-operatively and into their drug treatment. I have several penpals now.  They also have an oncology nurse hotline that one can call with questions from nephrectomy to drug therapy to clinical trials - they are knowledgable and very, very helpful. This is an amazing group and I wish I had known about them a little sooner.

Although not specifically related to kidney cancer, Lance Armstrong's site is fabulous. You can call and order a free notebook to organize your medical information and to assist you in being the director of your own health care. He also has some forms that can be downloaded and printed and some great links to other sites, as well. There are also survivor stories. Our mindset matches the mission of live strong.  We are choosing life and we are choosing strength - livestrong.

The link is:  www.livestrong.org

• When you get a cancer diagnosis, you are shocked and in need of some basic resources to get you started. Do NOT overlook the American Cancer Society website as I did. They have some great on-line tools that guide you in what questions you can be asking the doctors. Go to: www.cancer.org
• The Kidney Cancer Association is an amazing organization with some great information about kidney cancer and the various forms. http://www.curekidneycancer.org/
• The National Comprehensive Cancer Network is a site that has some great current information about the various types of cancers and some research-based practice guidelines www.nccn.org.