Dr. Eric Jonasch of the Urology Department at M.D. Anderson Cancer Center in Houston is recruiting patients for his clinical trial of Sutent (Pfizer) for VHL

This is an important study, because it tests the effectiveness of Sunitinib (otherwise known as Sutent), which has been approved by the FDA for use with advanced kidney cancer. It has not yet been approved “for VHL”, so at this point most insurance companies will decline to cover the drug, believing it is “experimental”. We have pretty good safety information about the drug because of the hundreds of people who took it in earlier trials for other conditions. What we lack is data on its effectiveness with the various kinds of tumors of VHL.

The goal of this trial is to find ways of controlling VHL with less surgical intervention. Specifically, it aims to determine whether Sutent is helpful in controlling VHL tumors. If so, the data gathered will help to get “VHL” on the label and make it more available for treating people with VHL.

Please read and discuss this information at vhl.org/trials. Patients and physicians are welcome to contact Dr. Jonasch or his clinical research nurse, Cherie Perez, at 713-563-1602.

As printed in the VHL Family Forum 15:1, January 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.