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. http://www.lowdosenaltrexone.org

thank you, every option is worth exploring.

I have a question about your dad's results. Has this done anything for the lesions? Or maybe that question is irrelevant because the steroids (dexamethasone) had already taken care of them. I'm curious whether the diet and naltrexone appears to be reversing the effects of the disease or just providing better strength and health while the disease progresses. Not that strength and feeling better are a bad thing even by themselves! That, of course, is a terrific benefit, even it didn't seem to be healing the disease. If it also appears to be turning the course of the disease around, that's really, really great.

We went into the appointment with the Naturopath Dr simply looking for symptom relief, namely help with appetite and energy levels - we were very surprised by this suggested treatment and in his confidence that it could for all intents and purposes stop the disease. The dexemathasone worked immediately (as it will) in shrinking the extrernal and internal tumours and he is still on it - as our dr is also licenced for pharmaceuticals he would have started my dad on the dexamethosone for had he not been on it, so I don't know that the Naltrexone would have had the immediate physical effects as the steroid. We are only moving into week 3 of the Naltrexone and it is a drug that you build up in dosage rather than taper down like with Dexamethasone so we are still a week away from it being at the levels where it will start to affect the disease - a frightening waiting game but this protocol gives us at least some hope - where we originally were given none.

Hi Everyone! I am so glad to hear that kwickheim's father is responding to the dexamethasone and doing better. My father was also given dexamethasone as part of his treatement for this cancer in additon to the 2 rounds of hyper C-VAD and 2 rounds of methotrexate chemo, followed by total body irradiation and stem cell transplant. The Dexamethasone he was given as part of his treatment also helped to diminish his skin lesions very quickly and I think played a role in helping to diminish the quick pace that this cancer moves. This medication reacted quickly, in a matter of days to reduce the lesions and then cause them to disappear completely. We were very blessed to have a young man from New York donate stem cells for his transplant. Although the blood types were different, he was a 10 point match with my father. We are so thankful to this anonymous young man for his gift of life and for his sacrifice. We just passed the hundred day mark post stem cell transplant on Wednesday. All scans so far are clear of cancer. My father is doing well so far with minimal side effects except fatigue , low blood counts, and the occassional infection or nose bleed and edema in his legs. We continue to study and read anything and everything about any changes in treatment options and look forward to hearing from others who are walking this journey like us. Wishing everyone all the best and hope and pray for successful outcomes for all!