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Patient Perspective: Chris White’s Journey
Guest blog by Chris White, a mucosal melanoma survivor who’s journey started in 2018:
Early 2018, Chris developed what he thought was a hemorrhoid followed shortly by a lump in his groin the size of a golf ball. Not assuming the two were connected, the lump which the docs first thought could be a femoral hernia was removed first and the hemorrhoid checked second the first week of July. The pathology from the lump in the groin proved that the hemorrhoid was the primary source of a malignant metastatic cancer called Anorectal Mucosal Melanoma. After meeting with the oncologist at Texas oncology, they referred Chris to see a specialist down at MD Anderson. They explained there is no known cause or standard of treatment for this type of cancer, and by the time most people are diagnosed, the cancer has advanced and the prognosis are usually grim. But Chris was 36 years old with a passion for life and a will to live and said “give me what you got, I can take it.”
Initially thought to be localized to just the two tumors, Chris then had his primary tumor removed from the rectum along with a groin dissection surgery to remove any more possible lymph nodes that could be carrying disease. Following surgery recovery, Chris then had five days of targeted radiation and did a pet scan that November only to show that the cancer had already spread to the lungs, liver, and other nodes throughout the body. Over the next year, the docs tried everything that they had to keep the cancer at bay until they could find something that worked. Additional treatments included multiple types of chemotherapy, immunotherapies, and radiation. By the summer of 2019, Chris developed colitis from all the treatments and was put on high-dose steroids. By the time Chris recovered from the colitis Chris’s treatment options were running slim. It was then that MD Anderson said he needed a treatment called TIL which stood for tumor infiltrating lymphocytes.
Chris then went on to UCHealth Anschutz in Aurora, Colorado to be part of that phase 2, cohort 4 clinical trial known as C-144-01 LN 144 by Iovance Biopharma.
Chris sign his consents and had a surgery for the till harvest in November 2018, and was scheduled to be admitted to the hospital by mid December. Unfortunately, due to all the previous treatments, Chris had developed cataracts from the conjunctivitis and uveitis from the immunotherapies and was clinically declining rapidly. Within weeks of doing baseline scans, It was discovered Chris developed a brain metastasis, which immediately disqualified him from the trial. He was told on December 10 2019 to call hospice and settle his affairs because the timeline for the clinical trial was about to end. Devastated but still not giving up, Chris had lost a battle, but the war wasn’t over. The docs said there’s still a chance but it is extremely small. In order to get back in he would have to stabilize or reduce the brain metastasis bit the brain MRI could be done no later December 24, so he had literally two weeks. His mother Kathy went into beast mode in working on getting the insurance approval needed for the radiation and by the 16th she got it. Chris needed to have five sessions but there was only four days so on the fourth day he got a double dose and then did his MRI scan on December 24, 2019. He then had to wait until 3 January when he traveled to Colorado for the results. He had what was called pseudo progression, which meant that the tumor would go up before it came down but it worked. He was admitted to the hospital and on January 15, 2020 he was given his TIL then followed by six doses of IL-2.
Chris’ tumors rapidly decreased and within a year they were gone. As part of a five-year study, Chris still has two more years of scans going in every three months for full body CT and brain MRI. For the past two years, scans have shown him to be clear of any metastatic disease, and no evidence of disease. Chris has hung up his hardhat in the construction industry and is full-time dedicated to telling his story and providing hope. You can be at the bottom of the ninth at the 11th hour and still hit a home run. It’s not over till it’s over.
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