Bookmark-worthy Resources for Stage 4 Melanomaby Barbara O'Dair Health Writer
If you’ve just been diagnosed with stage 4 melanoma, you’re likely feeling a mix of strong emotions: anger, fear, anxiety, and more. We’re here to help you handle important decisions that this diagnosis requires. The following guide will point you to go-to sources for information and education about metastatic melanoma, the best social media influencers and blogs to support you emotionally, and how to find a clinical trial that’s right for you.
MRF is packed with accessible science and research, helpful infographics, and personal stories, and it grabs hearts and minds with its cheeky social media campaigns (#GETNAKED is one of them)—all in the effort to raise awareness for melanoma, including stage 4. Aside from bringing patients together via support groups, MRF also connects patient advocates with legislators to work toward a melanoma-free future.
Also check out: Aim at Melanoma Foundation, where you can chat with an online physician’s assistant about stage 4 melanoma or join a support group.
Tracy Callahan, who was nicknamed the Polka Dot Mama by her kids when she was diagnosed with melanoma, started this venture as a blog. It has since morphed into a nonprofit foundation that raises hundreds of thousands of dollars for melanoma research and free skin screenings. (In one marathon seven-hour stretch, they broke records by administering nine-hundred and sixty-three screenings.)
Don't miss: In partnership with the American Academy of Dermatology’s SPOTme skin cancer screening program, Polka Dot offers free skin screenings with dates and locations announced on its site.
Do you and your doctor think it’s a good idea join a metastatic melanoma research study? To search for trials that are currently recruiting or planning to recruit, the National Institutes of Health is a good first step. You can search trials by stage of disease and your location. You can also check the Melanoma Research Alliance website.
Don't miss: After looking for trials, click over the NIH’s National Cancer Institute, which has the latest info melanoma drugs that have been approved and an inventory of clinical study data.
This rich website is devoted to supporting patients with all kinds of cancer, including melanoma. You can access a cancer-support hotline, connect with an online support group, get info about in-person meetings based on location, and lots more.
Don't miss: You’ll want to spend some time exploring the site’s “Virtual Home”: Find nutritious recipes in the kitchen, read about immunotherapy in the library, and practice mindfulness meditation in the mind/body studio.
This organization has established itself as an authority on a wide array of skin cancer topics, including melanoma, and gives its seal of approval to sun protection products (topical treatments and clothing) that meet their strict criteria. The site itself offers a wealth of info on risk factors, treatments, and the latest research.
Don't miss: If you’re looking for a new dermatologist, you can find one near you via the site’s find a doctor tool.
With 21.5 K Instagram followers, Call Time on Melanoma is a skin cancer awareness nonprofit founded by Lisa Patulny. Launched as a tribute to a friend who was diagnosed with stage 4 melanoma, CTOM is all about the SPF, as it strives to be “the voice that challenges sun-tanning culture.”
Also check out: @Jessvanzeil. At 21, Jess Van Zeil lost an eye to stage 4 ocular melanoma. Several years later, she calls herself a “resilience expert” and shows us why on a range of platforms including Instagram, where she models awesome eye patches, Facebook, her blog, and a best-selling book.
Facebook: My Melanoma Journey
MMJ is a small public Facebook group started in 2018 by a woman with a new melanoma diagnosis. The page has since morphed into a forum for symptoms and sometimes graphic photos. Perhaps not for the faint of heart, it is a reminder of both how even a tiny melanoma can be a very big deal.
Also check out: Melanoma & Skin Cancer Awareness. The melanoma stories on this Facebook page are curated from a wide variety of sources. Posts include news articles, personal profiles, first-person accounts, videos, and (sometimes graphic) photographs of melanoma. Founded in 2011, the group is 11.5 K strong.
This Facebook group, founded in 2014, is a “safe space for everyone who is dealing with skin cancer/melanoma (survivors, patients, caregivers, etc.) to vent their feelings and gain support from others.” The group is private with about 3,000 members; you can ask to join via link on the page.
Also check out: Living with Melanoma, a private Facebook group with a few thousand members and an emphasis on skin protection. Created in 2017 for melanoma patients, families and caregivers, it’s robust with hundreds of posts per month.
Steven Farrell is a motivational speaker (and actor Colin Farrell’s brother-in-law) who was diagnosed with melanoma in 2017. Since then, he has made “Do It Now” his mantra, which is very much in evidence on his podcast. Only a few of his shows speak directly to melanoma, but the series offers stories of adversity and triumph, gratitude and perseverance.
Also check out: “Emerging Treatments for Metastatic Melanoma”, an episode from CancerCare’s Connect Education Workshops and “Melanoma: What’s the Latest?”, a web chat from Dana-Farber Cancer Conversations, which highlights new treatments and is hosted by oncology experts.