Malignant melanoma of the choroid in the eye

@mjayjay, were the lesions found in your liver and new cancer or spread from melanoma? Any update? How are you doing?

I was diagnosed in March of 2024 with malignant melanoma of the choroid. My tumor is medium size and lobular. I had brachytherapy at MD Anderson in May. I had unusual complications afterward. My cornea is swollen (edema) and my pupil stayed dilated. It went down a little but is irregular shape and fixed. I have had extreme sensitivity to the light from both of this issues. My retina is also swollen. I have lost most of my vision in that eye. In January I had a partial cornea transplant to try and help the cornea swelling and get some sight back. It is minutely improved and my vision is not much if any better. Hoping time will help. I am also having a series of retina injections for the swollen retina. My doctor tells me that even after radiation, part of the tumor is still there. This tumor does not go away. I had the biopsy when I had brachytherapy. It won't do anything to help me. It tells when I will most likely metastasize. It will also help for further study for the future. My tumor is a Class 2 which puts me at a high risk of metastasizing at 3 years. Immunotherapy is the only treatment and will buy 15 months they tell me. If I get in a trial with the new drug and immunotherapy they tell me it will give me 22 months. It's a lot. I try to 'carry on' but it is hard. I hope that research will find more information, I am part of a research study. In the meantime, I have faith, hope and love and live every minute to the fullest. I would be interested, for those you have had brachytherapy what kind of treatments followed. I want to be a part of the discussion. I hope I haven't said anything that would upset any one. I too am thankful for each day. At first it was hard to not be able to see with that eye. I'm getting better! And it is really okay, just learning to adapt and sometimes laugh at myself! One day at a time, always a good idea. (I have been reading posts. I came to this discussion to hear how others are coping, what treatments they have, and to bring some kind of understanding to all of this. I will be honest. I don't know if I can do it. It makes all of this constant in my mind. Thoughts anyone??????)

I was just diagnosed with liver cancer, I am having a pet scan next week to confirm it. I’m as scared as you were, and I’m hoping that everything went well for you.

Thank you for sharing that. I have been wondering about that and had no idea that is what it was called. I'm glad the Charles Bonnet Syndrome is abating/has abated for you over time.

No, it all happened so quickly. I was sitting in my parked car when I noticed a blue streak of light flash across my eye. The same thing happened the next day at the same time and place, so I went to an ophthalmologist. Normally, a referral is needed, but he didn't bother with it. He wasn't sure if it was a freckle or cancer and referred me to another, more experienced ophthalmologist. I was given the choice of having my eye removed or radiation treatment and told there would be no difference in the outcome. I chose the latter and was operated on a week later. I wasn't prepared for any of it at all and found I now had Charles Bonnet syndrome, which has abated over time. Paul

Hi Twocents, I replied below. It didn't go directly to you, sorry!

I'm sorry Paul. Do you know which class your tumor was in, if I may ask? Mine was a type 3.

Hi
I have the same. It took 7 years before metastases were found - in the liver where mets are initially found 90% of the time. There's not much to be done as UM is unusual in that metastases begin early on with the cancer. There are many supplements that might delay the cancer: ECGC, curcumin,resveratol, etc. I tried them all and there's no way of knowing if they work. Health authorities invariably throw doubt on these matters. I found the Canadian book "Foods to fight cancer" (tinyurl.com/469uexr4) useful as a guide, though I must admit heading to the icecream now-a-days. If I was to make one suggestion, take up Qigong as an exercise. It is a very light undemanding exercise and there are countless research papers showing that is useful with cancer. Not curative, but keeping you healthy and quieting down emotions. Also, don't stress your liver with alcohol, etc.
Best wishes, Paul

Hello twocents,
I was diagnosed with choroidal melanoma in November. I had radiation in December in Boston. It is definitely emotionally shocking, to say the least. I have been seeing a retinal oncologist and will begin seeing an oncologist this week. I'll also see an integrative doctor at the cancer center here. I personally believe diet and excercise plays a very big part in my outcome, and I am taking steps to change my diet and eating habits.and exercise habits. I am happy to communicate. Feel free to reach out.

Thank you for the welcome. I am so glad I have found this site.
It was by pure accident that my Melanoma was found.

I took my then 3 year old daughter ( after we moved back to Australia) to a skin specialist as I was directed by our LA Paediatrician to have her cappuccino birth mark regularly checked.
I just happen to say to my daughter’s doctor, on my way out the door, would you mind taking a look at this for me!

He sent me straight to a specialist who took biopsy that day!

Biopsy came back and specialist called me at home on a Saturday evening and asked me to see if I could have the girls (my two daughters at that time. a single parent ) watched by neighbours while he spoke to me about the results.

Specialist had me booked for surgery on the following Monday.
As previously mentioned here, I had noticed this spot on my leg below the patella for just over 4 years but never thought anything about it while in LA.
The spot as I call it was no more than the size of a Dime.

I now have a 8” scar that is hardly visible.
Stage two Tumor. I cannot remember the depth that is measured etc…
No Chemo No Radiation. Just check ups initially every three months for a year. Then moved to twice a year.

I have been back to this magnificent Professor at a major Melanoma Centre called The Poche Centre in North Sydney if anyone here fro Au.

I have since that date in 1996, had three more melanoma’s.

My back is a road map of large scars with removal of one lymph node, and thankfully not spread.

I am now dealing with a very angry inflamed red raw Actinic Keratosis that appeared on my breast. Punch Biopsy done and now calling my Professor to see what indeed he would do, compared to my GP who can remove and send away for further Biopsy.

Only just saw my twice annual Dermatologist on 9/2 who said when I pointed out to him the red scaly 5mm inflammation, ‘Yes that’s nothing’ !!

With my History ‘ Nothing’ in my opinion, requires another set of eyes. !!
I hope people challenge/question/research opinions if your not comfortable with what you feel is off kilter.

Thank you for reading everyone as as we say in Australia
‘Slip Slop Slap’

Slipping on a Shirt
Slopping on SunScreen
and Slapping on a hat.

We also have a Country Wide regulation for all schools.

No Hat, No Play.