Actually there really are not many if any new treatments for ocular melanoma. If this cancer gets to the liver, then it is a death sentence. When I was researching my disease I did come across a patient who had her liver sliced and diced and somehow they got the tumor out. But it was total luck and quite a bit of pain and suffering.
Was the DNA of your tumor ever tested in order to determine the likelihood that it might metastasize? My oncologist recommended I go with the brachytherapy (radiation treatment) at the outset. And she took a biopsy of my tumor when installing the plaque so the DNA could be tested. The results of the DNA tests indicated that my tumor was highly unlikely to metastasize. Phew! As I listened to your story it sounded to me like you should have had either brachytherapy immediately or had the eye removed immediately. Who knows when the cancer cells metastasized? The sooner your doctors killed the cancer in your eye the less chance of the cancer growing legs. I'm from the U.S. So I don't really have any idea how sophisticated your healthcare system is in the U.K. I don't want to sound negative. But it does not sound to be as good as in the U.S. My tumor was 4mm by 13mm in size. So it was supposedly on the small side for a medium sized tumor in my choroidal tissue. It showed up in the bottom right quadrant just barely touching my macula. It did not go into my macula zone. I lost all vision in that lower right quadrant. And for the 8-9 months following the surgery I still could see pretty well out of the eye. But the images were a little warped. The big hassle was a muscle attached to my eyeball was snipped during surgery in order to stitch the plaque to my eye. And after the surgery I had constant double vision. My eyes would not line up because the muscle that was snipped was gone. Ultimately my macula zone deteriorated. The radiation treatment was just too close to the macula. So I am now pretty much blind in the damaged eye. I have reasonable periphery vision. But I have no ability to read using that eye. The double vision is gone since I only have periphery vision left. Since the eyes do not work together, I lack depth perception. I had my treatment (surgery) in Sept, 2021. I wish you luck with your Stage 4 Journey. Being faced with that is not something I would wish on anybody.
Thank you Megan. Prayers lifted for your good health.
My mother passed away from Ocular Melanoma. I wish you all of the best. Thank you for sharing your story. 🙏💚
Megan wishing you well through your journey 🙏🙏🙏
Thank you for sharing your story!
Yes it was amazing
Wonderful video. Always good to hear fellow Omies stories. Found the background music distracting though😊
Love ❤️ the video
God bless 🫶🏻🙏🌹 I hope you have no suffering. Brave young lady
Always so grateful to patients willing to share their stories so courageously and talk about the hard topics.
Wow what an amazing story
There are so many new treatments, hopefully one will work
Actually there really are not many if any new treatments for ocular melanoma. If this cancer gets to the liver, then it is a death sentence. When I was researching my disease I did come across a patient who had her liver sliced and diced and somehow they got the tumor out. But it was total luck and quite a bit of pain and suffering.
I hope treatment heals you
Interesting the video:"Burzynski Movie".
Was the DNA of your tumor ever tested in order to determine the likelihood that it might metastasize? My oncologist recommended I go with the brachytherapy (radiation treatment) at the outset. And she took a biopsy of my tumor when installing the plaque so the DNA could be tested. The results of the DNA tests indicated that my tumor was highly unlikely to metastasize. Phew!
As I listened to your story it sounded to me like you should have had either brachytherapy immediately or had the eye removed immediately. Who knows when the cancer cells metastasized? The sooner your doctors killed the cancer in your eye the less chance of the cancer growing legs. I'm from the U.S. So I don't really have any idea how sophisticated your healthcare system is in the U.K. I don't want to sound negative. But it does not sound to be as good as in the U.S.
My tumor was 4mm by 13mm in size. So it was supposedly on the small side for a medium sized tumor in my choroidal tissue. It showed up in the bottom right quadrant just barely touching my macula. It did not go into my macula zone. I lost all vision in that lower right quadrant. And for the 8-9 months following the surgery I still could see pretty well out of the eye. But the images were a little warped. The big hassle was a muscle attached to my eyeball was snipped during surgery in order to stitch the plaque to my eye. And after the surgery I had constant double vision. My eyes would not line up because the muscle that was snipped was gone.
Ultimately my macula zone deteriorated. The radiation treatment was just too close to the macula. So I am now pretty much blind in the damaged eye. I have reasonable periphery vision. But I have no ability to read using that eye. The double vision is gone since I only have periphery vision left. Since the eyes do not work together, I lack depth perception. I had my treatment (surgery) in Sept, 2021.
I wish you luck with your Stage 4 Journey. Being faced with that is not something I would wish on anybody.