Hi everyone - I found this forum a few months ago and was relieved to find 'some' information about this disease. My 83 yr old father was diagnosed at the end of Aug 2012 after exhibiting the skin lesion symptoms since March of 2012. With chemo treatment likely to have worse effects than the disease itself my father chose to not go down that road choosing quality of life over quantity as were expecting he maybe had 3 - 6 months remaining. We decided in October to try Dexamethasone as growths were starting to affect his breathing in his chest and nasal areas - a CT scan two weeks after starting the Dexamethasone showed no abnormalities and his skin lesions had all but disappeared. Moving forward we found a Naturopathic Physician - who was the first Dr we saw that wasn't baffled by this disease. We are in week 2 of low dose Naltrexone protocol and I would recommend to anyone out there to consider this as an option. So far so good - with diet changes, vitamins and supplements my father's appetite has stabilized, his energy levels are up and down but this point he is still relatively active and doing much better than we would have expected at this point.
I hope this helps some of you out there, here is a link to the Low Dose Naltrexone website and the Dr we see here in Canada is Dr. Neil McKinney, B.Sc, N.D. and I would recommend him to anyone searching for an alternative approach.