Treatment: If a pancreatic or liver tumor is identified and able to be surgically excised, the skin lesions may normalize for an extended period of time, but because these tumors metastasize (spread to other areas of the body) quickly, surgery is not curative. In cases of end stage liver disease, surgery is not possible, and the goal of therapy is to increase quality of life and decrease uncomfortable skin lesions with supportive care and addressing the nutritional abnormalities. Supportive care includes supplementing protein and necessary minerals and enzymes through the diet and oral supplements or by weekly intravenous amino acid infusions that are performed in the hospital on an outpatient basis until improvement in the skin is noted. Unfortunately, despite the supportive care, the disease will progress.
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For 18 months I saw dentists, oral surgeons, family doctors, ENT’s, and emergency medicine doctors (both in the USA and the UK). They all called it ‘burning mouth syndrome’ and prescribed antibiotics, mouthwashes and anti-fungal creams. After begging for a biopsy, I got the call – it was cancer. I had surgery on my tongue but no chemo, radiation or neck dissection was needed. It was 2005. In 2010, I had pain in the same area which was dysplasia and they performed laser surgery on the same spot to ensure they got it all. In 2012, I had the same complaint of pain and a new spot. Dysplasia was diagnosed again but required no further treatment. Two months later, I complained of a spot and discomfort. They lasered it again. We need more time and attention devoted to oral cancer research. My story is not over!