#EyeGetDilated for Melanoma Awareness Month: Karen Kaludov

Guest blog by Karen Kaludov, an ocular melanoma survivor and advocate who shares her journey after her recent diagnosed in 2021:

Roughly 2,000 people in the US each year are diagnosed with ocular melanoma (OM). In 2021, I became one of them.

When I tell people I have eye cancer, I often get a response along the lines of, “Huh, I didn’t know that was a thing”. Yes, unfortunately, OM is a thing. And for a long while it was the first thing I thought of every morning.

One of the things I find difficult about living with OM is that there is so much to explain to people. Science has come so amazingly far with treating cancers, I think most people expect that after one is diagnosed with cancer, there is a proven course of treatment, and if you follow it, in the end, things are probably going to be fine. Instead, my experience, my daily life, is soaked in uncertainty.

It is true there are now good options for treating the primary eye tumor. Radiation plaque therapy, proton beam therapy, or even enucleation. But what weighs on me is the body of scientific literature that says 50% of people with uveal melanoma (the uvea is the middle part of the eye where my tumor was found) “succumb” to metastatic disease within 10 years. Further, this 50% mortality rate is unchanged despite all the recent advancements in diagnostic tools and treatment options for the primary eye tumor.

So, while OM is no longer the first thing I think about every morning, I still think about it every day. That’s in part because of the ever-constant physical reminders. First there was the distorted vision caused by the damage the radiation treatment did to my optic nerve. Now there is the empty cavity where my eye once was. The initial round of brachytherapy failed to fully kill the tumor, and it started to regrow, so I had my eye removed in February of this year.

While adjusting to life as a cyclops has been hard, is nothing compared to the uncertainty…dread…worry…fear… of metastasis. Even though the tumor (and my eye) is no longer in my body, there is no way to know if it was removed before a field of tiny, micro metastasis were released into my bloodstream. Well, actually, there is one way to know. I’ll know if one day those tiny, little, evil buggers take root, grow, and eventually show up on one of my every-six-month MRI and CT scans of my liver, lungs, and bones.

I will never forget the moment my doctor at Johns Hopkins told me that if the cancer metastasizes, I can expect to die in 8 to 13 months. Period. Full stop. Pregnant pause. I remember that moment so well because that was the moment the world, ever so briefly, stopped spinning.

I am heaved by the weight of uncertainty of life with OM, and at the same time hopeful that, if I need it, the science will be there for me. There isn’t yet a way to fully treat metastatic disease, but the science is getting closer. Last year the FDA approved the first-ever treatment for metastatic OM (tebentafusp-tebn) with a median survival rate of 21.7 months. And a quick search on clinicaltrials.gov yields a list of 54 active clinical trials. Many of these, like tebentafusp-tebn, are attempts to apply proven therapies for other cancers. The good news is that science has found effective treatments for so many cancers that I’m hoping soon it will become OM’s turn.

My spirits are also buoyed each time someone on one of the OM facebook groups posts that they are in a clinical trial and doing well two years after being diagnosed with metastatic disease. 50%; 8-13 months; 21.7 months. These are just numbers. They are not (yet) my fate.

Last week I bought a non-refundable ticket to Morocco for a vacation in November. How do I explain to people what an act of defiance that feels like?

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