"Looking for volunteers to try an experimental immunological therapy. Protocol ID 98-C-0139. The study will administer a vaccine concocted from the patient’s own cells, to determine whether the VHL tumor suppressor protein can be immunologically targeted by vaccination. The study proposes to treat patients with sporadic RCC who carry VHL mutations in their tumors with corresponding mutant VHL peptide vaccination. If, in the opinion of the principal or associate investigators, it is not in the best medical interest of the patient to enter this study, the patient will not be eligible."

Patients with known familial VHL are not eligible for the vaccine study. In fact it would be dangerous for people with VHL, as they could be harmed by participating. However, if you know other people who have Renal Cell Carcinoma, please feel free to refer them to this study -- a possible new therapy for cancer that has grown out of the research on VHL. This is only one example of how research on this disease is helping to unlock the secrets of cancer.

The purpose of the vaccine clinical trial is to generate an immune response against tumor cells and save the normal cells of the body. Therefore, the immune system must be able to recognize certain characteristics that exist in the cancer cells but not in the normal cells. One way that tumor cells can differ from other cells is in the presence of a sporadic mutation of the VHL gene, occurring at random during one’s lifetime. This mutation occurs in approximately 50% of renal cell cancer patients in the general population. Sporadic mutated VHL genes produce mutated proteins that are unique to the cancer cells, thus providing a "target" for the immune system.

If someone has a germline mutation of the VHL gene, or has inherited an alteration in the VHL gene in every cell, then the mutation is present in all cells and could cause the immune system to generate an attack on all cells, which would be a life-threatening situation.

For additional information, people with sporadic RCC who do not have VHL should please contact Deborah Pearson as shown below.

Open to VHL patients: In addition, there is a screening study (NCI-89-C-0086) which is specifically designed for patients who are known to have VHL. Volunteers who are accepted into the study will receive a comprehensive work-up, genetic counseling, and blood sampling. There is no treatment component for the screening study and it takes about 4 days to complete the testing and work up. If you are interested in it, you or your physician can call the Urologic Oncology Branch at 301-496-6353 to see if you may be eligible to participate. You will learn a great deal about your condition which you can use to help your local team learn more about VHL in general and your health maintenance in particular.

For more information on the screening study go to http://cnetdb.nci.nih.gov/trialsrch.shtml and enter the study number NCI-89-C-0086, or contact Deborah Pearson.

Deborah Pearson, Director of Outreach and Patient Recruitment, National Cancer Institute, Division of Clinical Sciences, Building 10, Room 12N214, Bethesda, Maryland 20892. Tel: +1.301.435.7854; Fax: +1.301.594.7951; E-mail: pearsond@mail.nih.gov

As printed in the VHL Family Forum 9:2, June 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.