Ocular Melanoma, Five Years Out

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This is Deadly, We’re Sorry

So they started by saying “This is deadly, we’re sorry.”  Five years ago today, February 23rd 2011 is a day that forever changed my life, for the better. I will retell the story briefly, so I can guide others to survival and also have the opportunity to thank a few amazing people who helped me along the way.

First. On the fateful Wednesday February 23rd, I went to see Dr John Cox for a routine eye exam. I was experiencing what I describe as “looking up from underwater” out of the corner of my  right field of vision. John was sure what I had, he told me it was cancer and sent me immediately to the next step, an Ophthalmologist/Retina Specialist.

So on the same morning that I went to see John, I was sent over to Dr Jim Byrne, a family friend, who happened to be off that day. John and I called Jim and he met me at his office anyway. After a few minutes looking at the tumor, Jim confirmed the diagnosis and said I needed to go to Birmingham or Vanderbilt, my choice. He said they would likely refer me on to another center, probably Wills in Philadelphia. Jim also asked me that day what I was afraid about the most. I told him that was an easy one, the loss of contact with my loving family, and the waiting for test results. He told me that Doctors have a name for that period between the scan and the results. It’s called “life”. You can choose to spend those hours or days however you choose, the outcome does not change those days. It was excellent advice.

Next was a visit to Dr Paul Sternberg at Vanderbilt Hospital the next day, Thursday. Dr Sternberg is a wonderful guy and he spent lots of time with me. At the end of the tests he told me to go back home and get a chest x-ray, a liver MRI and bloodwork to see if the cancer had already metastasized into the body. If it was they would recommend a different course of treatment since melanoma mets is universally fatal. Dr Sternberg also said that sometimes a doctor’s best course of action is a good referral.  Due to the seriousness of my case he recommended Wills Eye in Philadelphia as Dr Byrne had expected.

High Scanxiety

The next day was high-scanxiety Friday as my doctor, Ramann Nallamala, scheduled the tests. By mid-afternoon we were cleared for the trip to Philadelphia after a very tense and stressful period of “life” as Dr Byrne called it. By Sunday night we were in Philadelphia preparing for our appointment at Wills the next morning.

Monday morning February 28th we met with The Doctors Shields, the team of Jerry and Carol that wrote the textbook on treating eye cancer, literally.  They were professional and reassuring and deeply knowledgeable about their field. Being there gave me a comfort I can’t explain but it was empowering and timely. They told me to come back the next day for more measurements and to plan on two surgeries: one Thursday to install a radioactive plaque opposite the tumor inside my eyeball, and another one the following Monday to remove it.

After surgery we went home and tried to get back to life in the new normal. To help with local emergencies should they arise I reached out to a local oncologist and old family friend to help me schedule tests etc. Dr. Marshall Schreeder at Clearview Cancer has since helped me navigate treatment, he’s wonderful and I love his whole family.

70% Chance of Death from Metastatic Melanoma

Three months later we went back to Wills to receive the results of the genomic testing. Those results indicated that I had a 70% chance of metastatic spread and death from the disease within 48 months. That was the roughest news we received during the whole treatment period but it put us on a path of aggressive treatment to which I credit my survival.

That treatment included Avastin shots into the eyeball, one every three months for two years. In year two I also started on oral chemo called SUTENT prescribed by my Medical Oncologist at Thomas Jefferson Dr Takami Sato. Sr Sato is a rockstar in the treatment of metastatic melanoma and a great guy too. Also, to finish treating the tumor after plaque radiation I had TTT (Transpupillary thermotherapy), a laser beam aimed through your pupil to burn tissue on the back of the eye. Together these treatments have beaten the odds, I am still alive and not metastatic, and I have 20/40 vision in the “bad” eye. Amaxing.

So, after all of that, I am 60 months out today from diagnosis. Drs Cox, Byrne, Sternberg, Nallamala, Shields, Shields, Sato, and Schreeder have formed the dream team for me and I thank them so much for my site and my life.

 

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