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Elaine Sisk Shares her Experience as an Advocate during Advocacy Days

Elaine Miles

Guest blog post by Elaine Sisk, melanoma thriver and MRF supporter:

“My name is Elaine Sisk and I am a 6+ year survivor of advanced stage IV metastatic melanoma. My initial diagnosis of cutaneous melanoma occurred in 1991 at the age of 24, following years of sun exposure and tanning bed usage. It was early-stage disease at the time, limited to the immediate area around a mole on my back. Twenty-six years later and to my surprise, I developed a persistent cough that worsened over several months along with growing pain, fatigue and nausea as well as enlarged lymph nodes and what I would learn to be soft tissue lesions on my abdomen and back. In June 2017, I was advised that melanoma had returned as a high-volume metastatic disease which had spread throughout my body and brain. Given the extent of the disease, the prognosis was not optimistic; survival rates were quite low for those with stage IV disease. I was ineligible for clinical trial consideration due to brain metastasis, a common protocol exclusion criterion. Fortunately, the first of the combination immunotherapies had been approved specifically for metastatic melanoma; this would be my treatment plan for the next 2 years. Stereotactic radiation was administered to treat the original brain metastases and then again due to recurrence a year later.  Despite associated side effects which in some cases require lifelong management, treatment proved to be effective; within a few months, tumors reduced in size and eventually resolved altogether. I am now NED – no ongoing cancer treatment, simply monitoring through periodic scans and follow-ups. I am a testament to the advancements in drug development for melanoma and that positive outcomes are possible.

I became involved with the MRF years ago as a participant in the annual Miles for Melanoma 5K in Washington DC, as a way to support awareness given my early experience with melanoma. I returned to this event once again after my disease stabilized and I was physically able to participate. This time, I knew I wanted to become more supportive of the MRF mission and explore opportunities in advocacy. In 2023, I participated in MRF Advocacy Days which was an enlightening and empowering experience.

As a returning advocate for the 2024 MRF Advocacy Days, I was more confident leading the discussions with Congressional staff. I have a better perspective on speaking with these offices and how to balance the details of the requests with my patient story.”