Paitent Stories

Winnie Langelaar

Winnie Langelaar’s Melanoma Story

My name is Winnie Langelaar, and I want to share my melanoma story with you. I was born and raised in Abbotsford, British Columbia, but I have lived in various places around the world. After high school I lived in Iowa, Honduras, Côte d’Ivoire, and Washington, DC. From 2012 – 2023, I called Tokyo, Japan my home.

In late 2021, I noticed something on my skin right in the middle of my back. It was growing and would bleed occasionally. Concerned, I visited a dermatologist in January of 2022, who performed a biopsy. The result was malignant melanoma. I was then referred to Tokyo Medical University Hospital, where I underwent surgery on March 2nd to remove some lymph nodes under my right armpit, the tumour, and all the layers of skin as well as a 2 cm margin. I had a PET scan and lymph nodes tested, and they were clear.

My dermatologist suggested interferon shots around my graft site every two weeks, though it wasn’t even a proven protocol. I decided to proceed. However, by October 2022, I began experiencing regular headaches, which grew more intense. In January 2023, I informed my dermatologist, who recognizing that headaches weren’t a typical side effect of the interferon, ordered scans. These revealed nine lesions in my body, 5 in my head and 4 in my abdomen.

My dermatologist discussed potential treatments, including immunotherapy with Ipilimumab and Nivolumab, which I agreed to. The following week, I was admitted to the hospital, and received my first infusion. In February, I went to the hospital again for my second infusion. The first hint that something may be amiss was my liver enzymes were too high, and I could not receive the infusion at that time. I remained in the hospital, and things were not moving in the right direction. My thyroid, pancreas, colon and kidneys were also beginning to show signs that the immunotherapy was attacking them. I ended up taking 60mg of prednisone. By April, I began my infusions with only nivolumab.

Realizing I couldn’t continue my role as Middle School Principal position at Christian Academy in Japan, I returned to British Columbia by the end of June. Due to the gap in healthcare coverage, I had to temporarily pause my infusions until September when I became eligible. By October, the lesions were no longer evident in my body. I continued my treatment until January 2024, when a reaction to Nivolumab prompted a decision to delay any more treatment until my kidneys heal.

Throughout my journey, many people have supported me. In Japan, the people I worked with at Christian Academy drove me to and from the hospital, visited, brought meals, and were available for any other needs. Once I moved to BC, I had family and friends who lived nearby and helped with doctor appointments and other visits. I was relatively active and able to do most things on my own.

When I was diagnosed with the lesions, one of the teachers in Middle School, who loves to research, began to investigate immunotherapy, its side effects and anything else related to melanoma. She vetted the websites and would share them with me. She also found a Facebook group, Melanoma Stage 3&4 Support and Education Group est. 2019. This group was also very helpful as a support and answered questions. This is an International group, and I realized that different healthcare approaches exist in different countries. That is when I found Melanoma Canada. I joined the online support group mainly to listen to how health care for melanoma was different or the same as in Japan. I joined the support group and attended online workshops. These were very helpful for my adjustment to living in BC. I continue to attend workshops when I am able.

Before my diagnosis of malignant melanoma, I loved being in the sun. I rarely wore sunscreen or had a hat on while I was doing outdoor activities. I never thought I would have melanoma. It’s a reminder to us all that taking care of our skin is a part of taking care of our bodies.

Reflecting on my journey, I’ve come to appreciate the critical role support played in my recovery. Whether through prayers, cards, letters, emails, or simple words of encouragement, I am grateful for so many who were there for me. I’ve always tried to have a good attitude, facing each appointment as an opportunity to learn more about what is happening to my body and if there are ways I can help as I walk down this road.

My experience with malignant melanoma highlights the important lesson in self-care and gratitude for the support of others. Through this journey, I’ve learned a lot about my body’s resilience and the amazing way it works to help keep me healthy.

As May is Melanoma Awareness Month, I invite you to join me in spreading awareness and participating in Melanoma Canada’s Strides for Melanoma virtual event on May 26th. Together, let’s take steps to help stop skin cancer.