Conjuctival Malignant melanoma

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krierc
krierc Member Posts: 1 Member
edited March 5 in Rare and Other Cancers #1

My name is Carrie, I was diagnosed with a very rare form of eye cancer about 2 years ago called , conjuctival malignant melanoma. It makes up about 2% of all eye tumors . To find people with with this type of cancer has been very difficult , to say the least. To find a Dr. To treat it in AZ. has been near to impossible. I had a pretty large tumor initially with severe atypia and metastic cells. That basically means I'm at high risk for recurrence and potentially for the cancer to metastisize.  4 months after being diagnosed it did come back. I had my 2nd surgery. I started immunotherapy after the 1st surgery but stopped after 4 months due to terrible side effects AND the cancer came back. It's been a year 1/2 since my recurrence, I have a lesion on my eye again but no sign of cancer still . All of my scans have come back clear so far, thank God! Lots of pain in my , severe dry eye and cataracts now but no cancer at the moment so thankful for that !! This is my left eye BTW. I now have double & quadruple vision, depending on which way I'm looking. Very frustrating! As with any cancer , this is very scary . I would love to connect with someone who has the same or similar cancer as I have. Please reach out if you do . Although I'd be happy to talk to any of you of course 🙂 we'll need support!

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  • andstal
    andstal Member Posts: 6 Member
    #2
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    Hi, I've been battling Uveal melanoma for the past 8 years. I had my right eye removed in 2016, reoccurrence in 2019, lost everything in right eye socket, and now reoccurrence in right eye socket again this year. At first doctors were afraid it spread to my brain, so I had craniology surgery, all clear in the brain, but further imaging showed it metastasized to my lungs. I'm doing immunotherapy treatment and will find out in the next month or two if it is working. I'm in southern California and the only places that treat my eye cancer is at UCLA, or UCSD. I just found out earlier this week I have thyroid cancer and need my thyroid completely removed. I did not know a person can have multiple different cancers at the same time. Anyways, I'm always willing to chat with any other eye cancer friends out there.

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