Malignant melanoma of the choroid in the eye

Posted by twocents @twocents, Nov 1, 2018

My husband was diagnosed with a malignant melanoma in his eye last May. He had a radioactive plate inserted in his eye for four days the beginning of June. The melanoma has a 50% chance of spreading to the lungs, lymph nodes and liver. Has anyone in this group experienced this diagnosis?

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@rfinkel

I am getting ipi/nivo immunotherapy infusion. My ocular melanoma metastasized to my lungs - a pet scan showed no other suspect areas. My oncologist discussed using tebe but said I did not have the blood markers that indicated it would work. (I think that is for liver anyway) I have had genome mapping by foundation medicine and may get a recommendation for treatment predicated on their findings.
Is mayo currently treating patients with my problem and if so what are you using. I've talked with many patients on line and it seems that treatments do vary somewhat.

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I had ocular melanoma, that was seven years ago. It was successful, but now it went to the liver, I h as d embolization of the tumor and will start immunotherapy. I now it is so hard, to deal with. They say many positive things

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@sunflower319

I had ocular melanoma, that was seven years ago. It was successful, but now it went to the liver, I h as d embolization of the tumor and will start immunotherapy. I now it is so hard, to deal with. They say many positive things

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I had ocular melanoma with gama knife and has also spread to my liver was set up to start treatment

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On March 16, 2023 I was diagnosed with Ciliary body & choroidal melanoma. I also have a "pigment dusting" over the iris. I am being treated at Mayo in Jacksonville. I was given the option to treat the tumor with plaque radiation and just monitor the dusting. Another option was to remove the entire eye. We chose the radiation at this point. That happened 4/21 and removed 4/25. I sometimes wonder if I should have just removed the eye! So far my CT of the abdomen, chest X-ray and bloodwork does not show metastasis in organs BUT, based on notes in this blog, that in some people it took months to show their cancer spreading.

I meet with my oncologist Wednesday. I want to be prepared to ask the right questions. Can anyone contribute and let me know what questions I should be asking.

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How is your husband doing since his immunotherapy?

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@tiredfarmer

I had ocular melanoma with gama knife and has also spread to my liver was set up to start treatment

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Welcome @tiredfarmer. Have you started treatment? what treatments are you having?

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@me1229

On March 16, 2023 I was diagnosed with Ciliary body & choroidal melanoma. I also have a "pigment dusting" over the iris. I am being treated at Mayo in Jacksonville. I was given the option to treat the tumor with plaque radiation and just monitor the dusting. Another option was to remove the entire eye. We chose the radiation at this point. That happened 4/21 and removed 4/25. I sometimes wonder if I should have just removed the eye! So far my CT of the abdomen, chest X-ray and bloodwork does not show metastasis in organs BUT, based on notes in this blog, that in some people it took months to show their cancer spreading.

I meet with my oncologist Wednesday. I want to be prepared to ask the right questions. Can anyone contribute and let me know what questions I should be asking.

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@me1229, how did the meeting with your oncologist go earlier this month? What next steps do you decide upon?

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@sunflower319

I had ocular melanoma, that was seven years ago. It was successful, but now it went to the liver, I h as d embolization of the tumor and will start immunotherapy. I now it is so hard, to deal with. They say many positive things

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I am waiting to hear what the results are of my byopsy. how did your therapy work for you? I'm so scared.

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Hi. I was diagnosed and treated in 2018. I had the radiation patch and was cancer free up until today. It has spread to my liver. Is there any body still on here I can talk to? I have so many questions. I also have Multiple Sclerosis and I am worried about how this may affect it.
Has anyone had it spread to their brain? I'm so scared.

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@dontteachhate45

Hi. I was diagnosed and treated in 2018. I had the radiation patch and was cancer free up until today. It has spread to my liver. Is there any body still on here I can talk to? I have so many questions. I also have Multiple Sclerosis and I am worried about how this may affect it.
Has anyone had it spread to their brain? I'm so scared.

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Hi @dontteachhate45, I'm tagging fellow members @twocents @sunflower319 @tiredfarmer @me1229, who also have experience with melonoma of the eye that has spread to share their experiences with you.

Don, has the spread to your liver been confirmed? I know you were waiting for the results. What is the plan moving forward?

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@jenniferhunter

@twocents If you haven't seen the Ken Burns documentary about Mayo Clinic, one of the patient cases in the story is about melanoma of the eye, and that patient did very well. You can see the documentary on the PBS website (I think for a fee) and you can purchase a copy from PBS or Mayo. I thought it was wonderful, and that patient with the eye cancer was pregnant during her treatment. Maybe that would help to see a patient experience this treatment and with a good outcome.

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I saw that! It was a good show.

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