I discuss the general value of making your tumor and blood data public here. But what am I doing with the public data I can access?
I’m trying to apply the “network effect” to all cancer research.
Blog
Kidney Cancer Month: Value of Public Data
After a "High Risk of Recurrence" diagnosis in 2014 for a rare, terminal and untreatable kidney cancer, I was faced with many of the same challenges encountered by so many others with rare cancers. To learn more, I started attending Kidney Cancer conferences, spoke with specialists in the field, and began working with researchers and patient advocates to help expand the scope of their work and
Clinical Trial Search Tool Released
After several months of development, and input from many sources (Patient Advocate Robin Martinez and Drs. James Hsieh, Sandy Srinivas, James Leppert), we have now released a clinical trial search tool for rare kidney cancer. Check it out and let us know what you think,
Nizar Tannir: How do I treat my patients with nccRCC?
The Kidney Cancer Association held a "Survivors' Conference" on Saturday, April 16, 2016 at MD Anderson in Houston.
The KCA also kindly recorded a video (here).
I have reproduced particular slides of interest from Nizar Tannir's nccRCC presentation below:
Determining the appropriate Kidney Cancer Treatment
So what "process" does a doctor follow to determine the appropriate treatment for kidney cancer? I asked Memorial Sloan Kettering's Dr. James Hsieh about this and he sent the attached graphic. For those without 20/40 vision, I describe the graphic here.
Clinical Trials
A discussion of the ins and outs of clinical trials is here. You can research clinical trials using the sites listed below:
RareKidneyCancer.org Site Index
Topics include FAQs, Kidney Cancer Types. Cancer Biology. and Clinical Trial Lists. A site summary indexed by "Kidney Cancer Type" is below.
James Hsieh Research
Dr. Hsieh specializes in treating kidney cancers. His laboratory primarily focuses its efforts on translational kidney cancer research.
Frequently Asked Questions
This site is meant for patients who receive a rare Kidney Cancer diagnosis and physicians who give them.
This site's information is vetted by practicing physician scientists who work in the field of rare kidney cancers.
Types of Kidney Cancer
Kidney Cancer is not just one disease. There are a number of different cell types, each of which responds somewhat differently to treatment. Dr. W.
