Carla Tressell’s Journey with Ocular Melanoma

Guest blog from Carla Tressell who started her journey with OM in 2004: 

My name is Carla Tressell and I live with my husband, Jim, and our dog, Axle, in Arvada, CO.

My journey with ocular melanoma (OM) began in the Summer of 2004 when my optometrist found a spot on the back of my eye during my annual dilated eye exam. She referred me to an ophthalmologist and after further testing I was diagnosed with choroidal melanoma at the age of 44. I was not having any symptoms prior to diagnosis. I was given the options of plaque radiation (brachytherapy) or enucleation. I opted to have plaque radiation. Other than losing vision in the affected eye in 2006, all was OK until January 2013 when my surveillance blood work results showed elevated liver enzymes (ALK 481, ALT 173, AST 149). A CT scan and liver biopsy confirmed that the cancer had metastasized to my liver.

Since metastasis was found in January 2013, my treatment plan has included:

• three liver targeted Y-90 SIR Sphere treatments to my liver in 2013, 2014 and 2020.
• four clinical trials; MEK and AKT Inhibitor in 2013/2014 – stopped due to progression and I developed drug induced lupus; AEB1102 – 2017 – brain tumors found during pre-trial screenings so did not go on trial; Adoptive Transfer of Tumor Infiltrating Lymphocytes (TIL) – 2020 – after three trips to Pittsburgh, disqualified due to low white blood cell count so did not complete treatment; OKI-179 in 2021 – stopped due to poor quality of life – nausea and extreme fatigue.
• 2017 – Craniotomy to remove two cm lesion in my brain.
• 2017/2018 – 16 infusions of Keytruda (Pembrolizumab) – stopped after developing ulcerative colitis.
• 2019 – Stereotactic radiation to lesion on my brain that had increased in size.
• 2019/2020 – 13 infusions of Opdivo (Nivolumab) – stopped due to progression.
• 2021 – I was screened and I am eligible for Immunocore’s Tebentafusp (IMCgp100) treatment which is pending approval with the FDA. We are hopeful the FDA will approve this treatment this summer.
• 2021 – two infusions of Keytruda (second round). I started this treatment after I stopped OKI-179 trial. Opted to have this treatment until IMCgp100 is approved by FDA.

My husband is my caregiver and our dog is my personal therapy dog. I would be lost without the two of them. We are blessed to be surrounded with amazing family and friends. They have gone above and beyond to offer help in any way needed, provide tokens of kindness and many have travelled to spend time with us.

We are thankful for each day we are given. Jim and I love to travel and we have taken several trips since my metastasis diagnosis in 2013. We have been to Alaska, took a European River Cruise and we often travel to visit family and friends across the US. I have four siblings and we live in five states so we try to all get together every couple of years.

So much progress has been made since my initial diagnosis in 2004. Promising treatments are on the horizon and I pray they prove to be successful and a cure is in the near future. We only dreamed about a cure when I was first diagnosed or even when my first metastasis was found.

I learned about CURE OM when I attended the MRF’s Third Annual Wings of Hope for Melanoma Denver Gala in 2014. My interventional radiologist nominated me to be one of the Courage Award recipients that year which was a true honor. After the Gala, I joined online support groups to connect with other patients. I attended my first CURE OM symposium in Washington, DC in 2017. The collaboration between physicians, researchers, patients, caregivers and advocates is essential in finding a cure. This cannot be done in silos by one group or another but requires all of us to work together. I am a member of the CURE OM VISION Registry Steering Committee. My hope is that the VISION Registry, which recently launched, will be a key tool to educate, help find common denominators, enhance research and eventually find a cure. I hope others who are just finding out that this disease exists, and those that have been on their journey for a while, participate, are encouraged and benefit from this tool.

Thank you to CURE OM for being here for us and fighting with us. When I was first diagnosed it was hard for me to find another patient to discuss my fears and concerns with. Today, we are able to connect with patients not only in the US, but around the world. The Denver area has a strong group of patients and advocates that keep in touch with each other. I am so thankful for their love and support.

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