Metastatic uveal choroidal melanoma: Eye Cancer

Posted by leigha67 @leigha67, Feb 15 5:11am

Hi, I am Leigha. I was diagnosed with metastatic choroidal/ocular melanoma in Nov 2024 and sent to Boston for radiation therapy in Dec 2024. I'm terrified it's going to metastasize to the liver and worrying constantly. It's affecting my daily life a whole lot. I'd like to do everything possible to eat healthy and give myself the best chances of survival. Just living in fear right now. Looking to connect with others.

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pandre01 | @pandre01 | Feb 19 12:50am

Hi, mine metastasised to the liver 70 weeks ago, and I am having Tebenafusp treatment. So far, the cancer has been completely stable. I am using qigong to keep my circulation going without blockages, and my bloods have been normal all this time. Two suggestions: (1) Use Petrasol Modified Citrus Pectio to inhibit Gal-3, and (2) the macrophages inside the cancer have two forms which can be converted from the protective form to the aggressive form with Lactoferrin.
Best wishes.

leigha67 | @leigha67 | Feb 19 7:41am

Hello @pandre01, I'm sorry to read that you have had metastasis, and I am glad to read that it is stable so far. The advice you're sharing is so valuable. Did you learn about those treatments and medications from your oncologist or from research? Would you be able to share more of your journey? Warmly, Leigha

pandre01 | @pandre01 | Feb 19 2:52pm

The health system consists of silos so you need to do your own research. You can learn much on the internet and Google Scholar. I won't say more as your treatment is different from mine and will have different side effects. But continue to exercise and do have a look at Qigong. I am unfazed by the cancer, remain curious, have no negative thoughts and take every moment as it comes; it's just life.
P.S. I just noticed a typo in my original reply; it should be "PectaSol Modified Citrus Pectin".

leigha67 | @leigha67 | Feb 19 9:49pm

I appreciate your information.

Colleen Young, Connect Director | @colleenyoung | 5 days ago

@leigha67, in addition to the helpful posts from @pandre01, you may also be interested in these related discussions:
- Is anyone familiar with Choroidal Melanoma? https://connect.mayoclinic.org/discussion/is-anyone-familiar-with-choroidal-melanoma/
- Malignant melanoma of the choroid in the eye https://connect.mayoclinic.org/discussion/malignant-melanoma-of-the-choroid-in-the-eye/

Dealing with the worry of further metastasis is so hard. Mayo Clinic offers this free online course to help manage stress related to cancer. Perhaps it would help:
- Stress Management for Cancer https://mccmscontent.mayo.edu/LSC/CEC/stress-management-for-cancer/index.html#/

Have you talked to anyone like an oncology social worker or therapist?

leigha67 | @leigha67 | 5 days ago

Hi Colleen,
Thank you. I will take a look at those great suggestions. I spoke with a social worker from the cancer center today for resources. I will see the oncologist Friday. The cancer center has a melanoma support group, but I am working during that time frame, and am not able to take the time.