In 2005, an optometrist spotted a nevus (mole) near Dan's optic nerve. He had a battery of tests and measurements, and nothing happened for three years.
In the summer of 2008, the nevus started growing, and his ophthalmologist immediately sent him to Dr. Shields at Wills Eye Institute in Philadelphia, where he was diagnosed with ocular melanoma and had plaque radiation to shrink/kill the tumor.
Blood work, chest scans and MRIs were all clear for two years -- as late as March/April of 2010, even.
Late in the summer of 2010, Dan's ophthalmologist noticed the tumor had come back (opposite from where most of the radiation was) and had wrapped his optic nerve. He went back to Dr. Shields and had enucleation surgery in September 2010.
He was calm about everything for a while, as there were few other options, and he knew (from genetic testing) that this was due to a mutation.
But that was all before an MRI in November 2010 that showed three spots on his liver. In most cases where ocular melanoma metastasizes, the disease goes to the liver. We weren't prepared for it mentally.
A local oncologist referred him to a surgeon at Henry Ford Hospital, and Dan had a resection of the right lobe of his liver in early December 2010. He recovered really well, and CT scans showed no new growths.
But, in keeping with the preferences of an ocular melanoma specialist in Philadelphia (Dr. Sato), he also got an MRI afterwards. Unfortunately, that showed at least one 8 mm lesion on the left side of his liver. The doctors in Philadelphia also suspected anywhere from 10-12 other areas of concern (too small to show up "classically" as lesions).
To treat the one known lesion and really the entire liver, he went back to Philadelphia in February 2011 for the first course of immunoembolization. He went back to Philadelphia four weeks later for a second immunoembolization. After two such treatments, Dr. Sato was not satisfied that the treatments had the hoped-for effect. In April 2011, Dan was enrolled in a clinical trial to insert time-released chemo beads into his liver. After two such treatments, Dr. Sato was not satisfied and decided that liver-directed treatments should be discontinued and the focus should be on systemic treatments.
In early July 2011, Dan began a course of a recently-approved drug, ipilimumab (a monoclonal antibody) which was shown to be effective in 10-15 percent of metastatic melanoma cases. Dan underwent one treatment of "ippy." Right after the treatment, he suffered the first real side effects he'd had with any of the previous treatments. That's when things took a turn. WIthin three weeks after that ippy treatment, he had gained 15 pounds of fluid in his abdomen and lower body. The day before his second scheduled ippy treatment, his blood test results indicated that he was not ready for that treatment. The next day, he was admitted to Henry Ford with an extremely high creatinine level, indicating serious trouble with his kidneys.
He stayed in the hospital for a week while the kidney, liver and oncology docs tried to figure out what had happened. They gave him a cocktail of drugs and sent him home with a course of prednisone. The doctors theorized that he was having some of the more severe side effects of ippy. The following week at home was miserable for Dan. For the first time since being diagnosed in 2008, he seemed like a "sick" person. His symptoms were not improving and he struggled with normal activities.
He returned to Henry Ford and was admitted on August 14. While many of his blood tests had various abnormal readings before and when he was admitted, the most critical number was his bilirubin count which was increasing daily. It was not a good picture. The doctors struggled to medicate him to tweak some of the bloodwork results but the bilirubin continued to increase.
The doctors concluded that the progression of the cancer combined with damage to his liver from the various treatments could not be reversed. Dan entered hospice on August 22, 2011.
Ocular melanoma is very rare and the survival rate does not offer a positive outlook. But, he has been such a fighter through all of this. Undaunted, he was willing to undergo whatever it took no matter what so that he could be here with us for as long as possible. He continued to go to the office in August despite feeling awful and despite family protestations that he should probably be back in the hospital. He persevered.
He is now home and we are endeavoring to take care of him the way he took care of all of us in so many ways. His positive outlook and no-nonsense approach to these treatments and circumstances raised us up. We only want to try to do the same for him.