I'm not sure this getting to the right forum as I see at the top "Create Off-Topic Forum Topic" even thought I'm under the Ocular Melanoma Forum. Hopefully this gets to the right place. Anyway-
I am so bummed! I've been watching AND waiting for the anti-pd-1 trials to open and see that they exclude uveal melanoma. I've had some success with Ipi/Yervoy, being stable since April after finishing the Ipi trial the end of Dec., 2010. I have what look to be highly necrotic lesions in my liver, but still am showing a 3 cm mass near my stomach and a few spots in my abdomin. I was so hoping to find a anti--pd-1 trial. I saw on the Melanoma International website that a highly respected doc said it was 3 time better than Yervoy with fewer side effects. What can be done to get the drug companies to accept us. Would it help to call them or have our docs plead our case? HOPEFULLY they will drop the exclusion. I'vebeen fighting this disease since 2001 and have done GM-CSF, abraxane, avastin, carboplatin, temodar, gleevec, MEK, Ipi/Yervoy. There just does not seem to be much else out there. Any thoughts or recommendations???
Nan in Nebraska