De la mesa de Samantha Guild
This month’s newsletter is so chock-full it will be delivered in two parts: today the first part and a few weeks from now the second part. Here’s a preview of today’s articles:
Melissa Papock, founder of Cabana Life and a melanoma survivor, turned her desire for beautiful sun-protective clothing into a thriving business—this article tells her story. On May 4 at 5 pm EST tune in to Instagram Live (follow @aimatmelanoma and @cabanalife to be notified when we go live) to hear Melissa and me in conversation about the different ways we have responded to our own melanoma and how we’ve used that experience to help educate the public.
And please be sure to read about the Junior Auxiliary of Skin of Steel—a group of teens who fundraise for the International Melanoma Tissue Bank Consortium—and their upcoming event on May 23. Their fundraiser takes place outside of Chicago, but anyone, anywhere can participate.
This month’s newsletter is big because May is Melanoma Awareness Month. It’s the one month of the year in which there is a global focus on melanoma. May is the perfect time to remind everyone about using sunscreen, seeking shade, making their annual skin check appointments, and checking their own skin. AIM and many other melanoma and skin cancer organizations share this type of messaging throughout the month to educate the public.
Since a lot of the focus in May is on prevention and awareness, I’d like to spotlight an equally important but perhaps lesser-known part of our work in May (and all year round), which is supporting melanoma patients and families.
This week and last I have been in multi-day meetings for groups that are referred to short handedly as ECOG and SWOG. ECOG is the Eastern Cooperative Oncology Group, and SWOG is the Southwestern Oncology Group. These cooperative groups consist of a network of public and private medical institutions that conduct clinical trials to improve cancer care. I sit as the melanoma patient advocate in each of their respective melanoma working groups. My role is to serve as the patient voice in the development and execution of melanoma clinical trials. I review all aspects of trial design and protocols, which includes informed consents. I also continue to stay informed of clinical trial accrual progress. The purpose of my role is to ensure that all aspects of patients’ needs in clinical trials are met, e.g. logistical, financial, and emotional, and that patients fully understand the risks and benefits of participating in a trial.
Another example of our behind-the-scenes support work is our annual Women in Melanoma (WIM) meeting. The attendees are medical oncologists who specialize in melanoma. Two main goals of the meeting are to support the improvement of melanoma patient outcomes through a focus on strengthening the physician-patient relationship and to provide insights into best practices in communicating with patients with melanoma to improve outcomes. This segment of the meeting includes role-playing and active listening exercises, all to help oncologists understand how to better support their patients and families. This summer’s agenda will include optimizing telemedicine and inclusion of the patient voice in clinical trial design and protocols.
A third example is the websites and other resources we created for melanoma healthcare professionals and other healthcare professionals throughout the world. These websites are full of educational materials for healthcare providers themselves, as well as materials they can print and hand out to their patients on topics such as side effect management and treatment adherence. We think of it as helping healthcare providers better support their patients and families.
Finally, I want to note that Melanoma Awareness Month is also a time when we remember those who have passed away from this devastating disease. In all of the prevention, awareness, and support messaging, I don’t want to lose that important piece. I lost my sister, and so many of you have lost a loved one. My sincere condolences to you who have lost someone to melanoma.
AIM en la Fundación del Melanoma