Is anyone familiar with Choroidal Melanoma?

Thank you for the response. I will be praying for good outcomes. I think your son will have such an outcome. But feel free to email me directly if you have further questions. This melanoma may not be of general interest on this thread.
Needless to say I’ve been through it all in these past 6 years.

I wish all of you the best of luck and will keep you and your remarkable family close in my prayers.
Jo

I was diagnosed with choroidal melanoma in 2016 a month after giving birth to my youngest. I received wonderful care at Mayo and continue with my annual visits there as well. So far, with no metastasis. Deep breaths and one step at a time, one obstacle at a time. I have had some side effects from the treatment but am thankful every day that I am here to watch my kids grow.

Good Morning,
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'm happy to communicate. Feel free to reach out.

Good Morning Red,

Your story is so encouraging.
I'm going to my first oncology appointment tomorrow. May I ask what kind of treatment they gave you that caused side effects, and what you feel you've done that helped the most? Do you know what class of tumor you had?

Thanks,
Leigha

jkpoet,

Have you also had choroidal melanoma?

Best,

Leigha

Oh, Leila,
Forgive me. I didn’t see the first part of your post, or the encouraging response from Red.
It sounds like you have a good team of doctors - that’s key, as is getting emotional support from friends and family because it IS a shocking diagnosis, in part because it’s so rare.
I was diagnosed in 2016 and honestly, what helped me the most was tapping into my inner strength and resilience. That, and like Red said, appreciating the joys, whatever they may be for you, even if it’s binge watching your favorite show.
Good luck with your many appointments. It gets easier, promise.

Hi JKPoet, thank you for your encouraging words. I'm so happy you were able to find that peace and strength. I see the oncologist today for the first time and I've no idea what to expect, but three pages of questions, so I hope she's patient and able to address them all. Thanks again for your response. _Leigha

Hi Leigha, I do not remember the classification off the top of my head but may be able to look back and find it. The radiation can cause lasting effects, some of which show up 18-24 months after treatment. These were manageable effects for me, good to be aware of but know that there is help available. It’s best to go to all of your appointments and keep up with any recommendations by your specialists. I was treated with Avastin about 18 months after initial radiation for a period of a few years, but do not currently need this medication at this time. Cancer can weigh heavy on the heart and the mind. Find comfort In things that bring you joy and be kind to yourself.

Thank you Red. I am glad to read that you don't need the Avastin anymore.

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. 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. 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.