I have been doing a lot of reading on Ocular Melanomas and their treatments. I have leaned that the disease is extremely rare and very dangerous. When I had the nevus in my eye that was being monitored 12 years ago, only 1 in 8,000 people who had the nevus had it develop into a melanoma. Of those that did, 80% where choroidal melanomas as was the one I had. At the time, the radiation therapy versus the removal of my eye gave the same long term statistical possibilities. There are approximately 1200 new cases of ocular melanoma in the US each year. Of those treated early on, 50% in a 12-15 year period the melanoma metastasizes and is generally found in the liver first as it spreads through the blood system and not the lymphatic system as does skin melanoma. Statistically I have hit all those markers as time progressed.
I have learned not to read anything that was published before 2015 as it is all out of date today. While the medical community classifies ocular melanoma as an orphan cancer, since it is so rare, there are very few clinical approaches or trials in response to it. Untreated metastatic melanoma has a survival period of 6 months. Given new advances, the survival rate is increasing and there are some patients who have been progression free out to five or more years. Current therapies do not cure the disease but can stop progression or shrink tumors and so that is the goal of treatment. Perhaps I can last long enough for another treatment to be proven and then another. Perhaps not and that will have to be the reality of this situation.
The best hopes are currently being seen in the immunotherapy model and that is what the UM Melanoma Clinic is providing me at this time. If this course does not work or becomes intolerable for me, there is another course of combined immunotherapies that can be tried but it is currently much more difficult to handle. I also have the TACE procedure that can be tried where my liver is flooded with chemotherapy drugs in an effort to slow progression. My first treatment in this manner is Friday July 21, 2017.
There are a couple of unique approaches that are being researched at this time. One is to remove some of the stem cells from my body and have them reprogrammed based on a line of healthy cells that have become cancerous. . These would then be replaced in my system in an effort to have them replicate normally and destroy the current tumors cells. This has been done successfully with some cancers that are similar to the ocular melanoma cells. The second approach is to add drugs to my systems that may help direct the immunotherapy drugs in their effort to unmask and restart the cell death process that is shut off in certain cancers.
I have talked to Mary and let her know that since this cancer is so rare that I am willing to have the doctors consider any of these two approaches if available. Even if it just adds to the bed of knowledge about this cancer and its treatment for future patients. I have tried to spend my life in service to others and am not opposed to spending my last days trying to help those in the future with this kind of research. We will have to see where this all leads.
In the end, I know as my mystic friend Julian of Norwich says--All will be well and in the end all things will be well.
Praise God in everything!
Monday, July 17, 2017
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