Shelley B., Canada
In May 2022, I was diagnosed with Vulvar Mucosal Melanoma. I made an appointment with a medical oncologist who explained that I had a very rare subtype and a very poor prognosis. Surgery was scheduled for early June. I was sent to a radiation oncologist to explore external beam radiation as adjuvant therapy to clear any possible residual cancer cells. I began receiving immunotherapy in October, with infusions scheduled every 3 weeks for one year. I receive routine lab work and scans to monitor my progress.
David B. – California
I am a civil engineer and a construction manager but my biggest achievement is being a cancer survivor. After many nose bleeds, I had surgery to remove a “polyp” from my nose. The biopsy revealed Sinonasal Mucosal Melanoma. A second surgery and scans showed clear margins in 2018. I continued routine scans and in September 2019, metastases to my liver and lungs were seen. I started the combo immunotherapy Opdivo/Yervoy that resulted in significant side effects. My permanent side effects include Type I Diabetes, double vision, dry mouth and general lack of stamina. Scans in December 2019 showed the tumors had grown. My oncologist considered the treatment a failure and sent me home to settle my final affairs. Second opinions at UCSF and MD Anderson left doctors confused. I did another scan 3 months later and my tumors showed shrinkage which continued until sequential scans showed all of my tumors were gone! I have been tumor-free for 2.5 years. My Motto – “Live Your Best Life Every Day!”
I was diagnosed in January 2021. I thought it was a bad sinusitis, but it was MM.
I felt scared and alone, becauseMM is so rare and prognoses are not that good.
Doctors gave me immunotherapy, but the cancer spread to lymphs in my neck – it didn’t work.
I finally found another person in Denmark, who also had MM (rectal). Her name was Lone, and she introduced me to MMW. Then I changed from being a wreck to being a warrior.
Lone helped me write letters to the hospital, I found out that TIL had done some miracles on some – and I got into a clinical trial called TILT123.
In October 2021 I was injected with 69,2 mia T-cells. My scans showed my tumors got smaller and smaller. It stopped working at some point, but the rest was taken out with surgery.
Today there is no evidence of disease.
Roy C., Florida
I joined the Army in 1961 and completed basic and advanced infantry training before going to Korea to guard a top secret missile base. I was then assigned to the 3rd Infantry (The Old Guard) in VA. Soldiers in this assignment guard the Tomb of the Unknown Soldier and lead casket teams at Arlington Cemetery. We also performed military precision drills for foreign and domestic dignitaries. In 1963, I had the honor of assisting with the funeral ceremonies for President Kennedy.
At age 80, I was diagnosed with Anorectal Mucosal Melanoma. After several doctors misdiagnosed me. The bleeding and weight loss sent me to the hospital for an MRI that revealed a rectal mass and tumors throughout my pelvis and liver. During a colonoscopy, a biopsy was done that confirmed MM. I was treated with radiation and immunotherapy. I continued with monotherapy. My next scans showed that all of the tumors were gone except in my liver. The next scans 5 months later revealed that all of my tumors were gone! I continue with the monotherapy and routine scans and continue to be cancer free.
Judi M. – Australia
After many years of chronic sinus problems and not really getting a resolution, I tried to help myself with daily nasal rinses, having my amalgam fillings and root canals removed. In 2011, I began having nose bleeds and in 2017 I had a major bleed. I was referred to an ENT who prescribed a corticosteroid to put in my nasal rinses which helped. In 2019 I blew a polyp out of my right nostril. My Dr was firm in his view it was a blood clot, despite my protests, and threw it in the bin without sending it to pathology. Two months later I had a large tumor growing down my right nostril which was surgically removed and pathology results confirmed Mucosal Melanoma. A second surgery obtained clear margins.
In Australia, I did not qualify for immunotherapy until I found a tumor in my left cheek 11 months later – so another surgery and then 13 infusions of Nivolumab. The side-effects were quite severe – peripheral neuropathy in my hands, vitiligo, hypothyroidism and secondary adrenal insufficiency, the latter causing serious illness as it was left undiagnosed for 3 months until I changed Oncologist who told me the immunotherapy had attacked my pituitary gland.
I am now being monitored by quarterly PET-CT scans and taking Thyroxine and Hydrocortisone for life. I am currently NED (no evidence of disease).