Malignant melanoma of the choroid in the eye

@twocents, I get that. And you may have to accept that he won't change unless he finds the motivation to do so within himself. We had to accept that with my dad. So hard to do.

You might be inspired (or frustrated further?) by this discussion in the diabetes group where a small group of exercise adverse (originally) are encouraging each other through a gentle 12-week exercise program.
- Lighten Your Limbs With Friends https://connect.mayoclinic.org/discussion/lighten-your-limbs-with-friends/

Here's the link to the program they are following: https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/walking/art-20050972

Does your husband like to walk? Might that be something to do together?

@crobi1974 My husband had a plaque with radioactive beads sewn on to his eye for four days last June. The doctors told us it would never be completely gone, that it would just shrivel up kind of like a raisin. At appointment with the retina specialist they said it wasn’t as active as it was and may have shrunk a little bit. He also goes to the oncologist every three months for blood work and every six months for a full body scan to see if it has metastasized. So far so good! Good luck to you.

My daughter is only 26 and was just diagnosed with a Choroidal Melanoma. She gets the PET scan this week and then the radiation oncologist will put in the order for the plaque radiation to be constructed for her and then put on her eye. She hasn't had any vision loss and discovered it through a routine eye exam. We just found out all of this 1 week ago. We have already been to 4 different doctors. It is overwhelming for her, but I am angry. Angry that a 26-year-old mom of a 2-year-old has to get something that is so uncommon for her age. They are looking at her like they had never seen this before, and in all fairness, they don't know what the prognosis is because most studies only go out 10-15 years after diagnosis. Well, that only puts her at 40! As her mom, I am feeling so helpless and I know they are moving fast enough but for me, it isn't. I still have more questions, so we keep messaging the place to get answers but I can't find a consensus online about certain things. Except, yeah - 50% chance of spreading to the liver over her lifetime. THAT IS NOT ACCEPTABLE!!! I cannot handle those odds right now. I am stuck in the anger phase. I am snapping at my family - (not her) but wear a mask at work all week of "yes, thank you, I am ok. just pray" and I want to just scream and shout. Sorry for venting but I don't have anywhere or anyone else to spill this out to right now. Please know I am keeping everyone who is dealing with this cloud over their life in my thoughts and prayers, but how do you keep going - is it like looking over your shoulder, or did you eventually move away from these feelings... It is so new for us right now. My poor girl.

Hi @treychic and welcome to Connect. It must be so heart-breaking to be going through this with your daughter. I hope that you can find some comfort interacting with this community who will always allow you to vent and get your anger out on the situation you are currently in.

I wanted to introduce you to fellow Connect member @twocents who has experience with this cancer and may be able to provide you support.

Back to you @treychic how is your daughter coping with all of this?

Welcome @bob45, I’m tagging you here because you mentioned that your wife has been diagnosed with melanoma of the eye. Click this link to read previous posts: https://connect.mayoclinic.org/discussion/malignant-melanoma-of-the-choroid-in-the-eye/

And to connect with members like @twocents @grammalori @donie @nanasova and others.

Bob, is this a recent diagnosis for you and your wife? Have treatment options been discussed?

I had the plaque inserted in 2020, it was unsuccessful and my eye was removed in December of 2021. I also had scans every three months. 2 wks ago it was determined that my cancer had metastasized and is on my lungs and was confirmed last week by broncoscopy. I am scheduled to start treatment in Chicago in one week. Meantime I am waiting to hear back from Mayo.

I had radioactive plaque inserted in my right eye in December 2020. The treatment was unsuccessful, and my eye was removed about a year later. Are used to have you had scans every three months and two weeks ago. It was determined that the cancer has metastasized to my lungs. One week ago, a bronchoscopy confirmed the spread. I am scheduled to start treatment next week at Northwestern Hospital in Chicago. Meantime I have contacted mail and am waiting for their response.

Welcome @rfinkel, that must've been a shock to hear that the occular melanoma has metastasized. I'm tagging @bob45 @twocents to bring them into the discussion as well.

Rfinkel, what type of treatment will you start next week?

I will be starting immuno therapy. I don't believe a cure is expected. just n extension of life.

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.