Patient Story Giulia Newton – Metastatic Desmoplastic Melanoma (Cutaneous)

Guest Blog Post by Giulia Newton:

“I grew up in Tuscany, Italy in the 1960s where my Scottish skin burned in the summer sun. There was little education at that time that UV radiation is a carcinogen.  

As an adult, my career brought opportunities to live in several countries – UK, France and Japan, before I moved to the US in 1999. I grew increasingly aware of the importance of sun protection, especially after having a basal cell carcinoma removed from my face in 2001.   

In 2006 I was diagnosed with melanoma which was treated with a wide excision on my right shoulder. The margins and the sentinel lymph node were clear. For the next 5 years I was followed at a melanoma center. As all was well, my care was transferred to a community dermatologist for annual skin checks. Life was busy with my sons and career. My health had always been a priority and I enjoyed running and pilates classes. The possibility of metastatic melanoma was not top of mind. 

Fifteen years later, I walked into my local ER at 2am with chest pain. By 4am, two doctors were at my bedside telling me that I had a large mass in my right lung. The mass extended through my pulmonary vein to the back of my heart. And it had occluded my bronchus causing post-obstructive pneumonia. I was blindsided by what I heard. I called my husband (who was traveling), but the shock prevented me from getting any words out. The nurse took my phone and let him know. I had just turned 60, become a grandmother and recently retired. I was enjoying a new phase of my life. My world had just been turned upside down. 

After a lung biopsy, PET scan and molecular testing, I started treatment. The testing identified a high tumor mutational burden, no BRAF mutation and a PDL-1 biomarker of 95%. My oncologist said I was a good candidate for immunotherapy – Ipilimumab and Nivolumab infusions in my case.   

After 7 months of infusions, I underwent a right bilobectomy, with resection of the right superior pulmonary vein and repair of left atrium. I was fortunate to have access to a major medical center with NCI designation just 40 miles from my home. Following an 8-hour procedure by an incredible surgical team, I spent a week in the ICU recovering. Once home, I started my pulmonary and physical rehabilitation program. Initially small hills felt like climbing Mount Everest in terms of effort. But I was encouraged by my progress and understood that with time, I could get back to doing all the outdoor things that I love: hiking, running, and enjoying walks with my husband and dog.  

Six weeks after surgery I restarted immunotherapy. My diagnosis is metastatic desmoplastic melanoma, a rare sub-type, which represents 2-4% of cutaneous melanoma. It was my oncologist that told me about an upcoming Miles for Melanoma event. I registered there and met fellow patients and learned more about the MRF’s important work.   

In 2023 I attended my first MRF advocacy days in Washington DC. It was empowering to feel part of a coordinated movement to drive research funding, promote prevention programs and eliminate barriers impeding access to care for melanoma patients. I applied to be a MRF grant reviewer and then a CDMRP grant reviewer. I returned to be part of the MRF Advocacy days in 2024, reconnecting with MRF staff and passionate survivors, thrivers and carers, all determined to be heard by law makers and make an impact to prevent and treat melanoma.   

I am thankful to the scientific researchers that developed immunotherapy. And I am indebted to the many melanoma patients that courageously participated in clinical trials, so that the immunotherapy drugs that I benefitted from could gain FDA approval.  I hope to give back to the incredible community that MRF represents and serves.”