(This is the original unedited version written for KCCure)
Forty years ago, MIT accepted me to grad school.
I was a “local boy” raised in Texas, working in my teenage years with my father in refineries in the Houston area. I remember remarking to my Dad, “A whole lot of people die early from kidney cancer in this job”.
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.
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
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,
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:
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.
A discussion of the ins and outs of clinical trials is here. You can research clinical trials using the sites listed below:
Topics include FAQs, Kidney Cancer Types. Cancer Biology. and Clinical Trial Lists. A site summary indexed by "Kidney Cancer Type" is below.
Dr. Hsieh specializes in treating kidney cancers. His laboratory primarily focuses its efforts on translational kidney cancer research.
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.
