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#OutoftheShadows: Toni English

Guest blog by Toni English, a Sinonasal Mucosal Melanoma survivor who was diagnosed in 2015:

Toni English

Toni English grew up in a military family and traveled all over the US and to Japan. Her childhood was filled with an appreciation for different customs and cultures. She is a wife, a mother and a grandmother and is enjoying retired life near the coast. Toni is a woman of strong faith and when she received her diagnosis of Sinonasal Mucosal Melanoma in 2015, the only thing she knew to do was put whatever was ahead of her in God’s hands. She used her treatment journey as an opportunity to share her testimony of faith. At the time of diagnosis, Toni was given 6 months to live. Her faith and determination to find a treatment that would change that outcome became her passion.

Toni made her first appointment with a general ENT because she had been experiencing sinus problems and nose bleeds. After a missed diagnosis, several scans and tests, the diagnosis was confirmed as stage 4 Sinonasal Mucosal Melanoma. She had never heard of this kind of cancer and did the very worst thing she could have done – she went to the internet for information. The outdated information was scary and vague. There was no standard of care for this orphan disease and there was no known treatment for it.

She began to search for any doctor in her area that knew what this was and found a Melanoma Specialist 3 hours away who was familiar with MM. She scheduled her first appointment where the diagnosis was confirmed and a treatment plan was put into place. She had surgery to remove all of the tumor followed by radiation treatment. She was pronounced cancer-free at the end of the treatment and told to continue with regular checkups. One year later, the scans showed metastases to the brain, the lungs and the right kidney. Her doctor began a treatment of immunotherapy and she had Gamma Knife radiation for the brain metastases.

During all of this treatment, Toni’s husband decided to retire so she was packing and preparing to sell their home of 13 years to move closer to her new grandson. This also meant finding another Melanoma Specialist that was familiar with Mucosal Melanoma who could continue her treatment and care. The first immunotherapy had no effect so a second combination immunotherapy was started which caused serious side effects resulting in hospitalization. After a period of time to recover and become stabilized, she wasn’t sure what else could be done. In January 2018, she went in for her next scheduled appointment and asked her oncologist what else could be done? He presented her with an opportunity to participate in a clinical trial for TIL (Tumor Infiltrating Lymphocyte) therapy. She eagerly agreed and began the process of evaluation to see if she qualified. The response was positive and after completing all of the required tests and having the tumor tissue harvested for the therapy, she was admitted to the hospital. She spent one week receiving immune depletion drugs and on April 2, 2018 she received her TIL infusion. Six weeks later, her scans showed significant shrinkage. After six months, all of the tumors were gone and she was NED! (No Evidence of Disease)

Toni continues routine monitoring and remains cancer-free. She has credited her survival as a gift from God and now uses her survival to advocate and raise awareness for Mucosal Melanoma and provide support and encouragement to other MM patients and their caregivers. She does this through social media, phone calls and meeting other MM patients who come to her area for treatment. She is the Operations Director for a new foundation that was recently set up to honor the legacy of another brave MM patient who lost her battle. Toni was also instrumental in creating a new website with the help of other MM patients to provide up to date information and support with resources for newly diagnosed patients and their caregivers. Toni is passionate about bringing hope and encouragement every day and lives by the motto – “No One Fights Alone!”

Mucosal Melanoma Website: www.mmwarriors.org  Facebook: Mucosal Melanoma Warriors

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