If you and your physician feel that Nexavar, Sutent, Avastin, or any of the other new drugs might be the thing for you to try, please help our entire community by making sure that what you and your doctor learn becomes part of a central collection of information about using these drugs with VHL.

By compiling our learning together we will either learn their limitations, or we will gain approval for the drug “for VHL” and thus earn reimbursability. Because we are a small community, we need to hear from EVERYONE’s experiences with the drugs, and we need that feedback to be structured in a way that we can add it all together and figure out what’s going on.

Here’s the plan:

Ask your doctor to contact Dr. David F. McDermott, Clinical Director, Biologic Therapy Program, Dana Farber/Harvard Cancer Center Renal SPORE program. Dr. McDermott will be happy to discuss your case with physicians, but not with the patient directly. He is also in touch with a number of other clinical trials which might be even more appropriate for the patient’s particular situation.
If patients have questions, please ask them to call the VHL Family Alliance Hotline. We will do our best to answer questions, or will seek answers and reply.

Dr. McDermott is working with the pharmaceutical companies and other clinical researchers to set up a “protocol”, a set of guidelines for the administration of the drug, so that everyone using it will be doing so in a consistent way, and our learning will be structured. For people outside North America, please give your physicians the same referral to the VHLFA or to Dr. McDermott. We will all need to work together globally to learn enough to gain approval for VHL for any drug.

As printed in the VHL Family Forum 14:1, April/May 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.