When Marcus Reimel began experiencing bloody noses while in the shower every few weeks, he didn’t think much of it. But when the small growth in his nose began interfering with his breathing, he decided it warranted a trip to the doctor’s office.
Reimel, a 42-year-old Kuliouou Valley resident and father of three, was diagnosed with a rare and aggressive form of cancer, mucosal melanoma, which accounts for only 1 percent of all melanoma cases — about 700 cases in the U.S. annually.
Because it is so rare, little is known about the risk factors and treatment. But unlike other types of melanoma, it is not connected to sun exposure.
Since only a few cases have been reported in the islands, Reimel chose to seek treatment at the Ronald Reagan UCLA Medical Center.
Surgery to remove the growth included a small incision to lift the side of the nose so doctors could take a peek inside, he said. Once the procedure was done, Reimel wore a special mask that limited his movement and endured 30 sessions of radiation therapy.
"I went five days a week for six weeks. My energy was completely drained," he said.
Reimel finished the treatments in July and continued to have PET (positron emission tomography) scans every few months to check if the cancer had spread. During a March 7 scan, a lump was found in his neck and doctors discovered the cancer had metastasized. Now Reimel is seeking new treatments to boost his immune system.
"Most mucosal melanomas arise from the nasal cavity and the oral cavity. They can be pigmented lesions that grow progressively," said Melvin Palalay, Reimel’s oncologist at OnCare Hawaii Inc. "In the nasal cavity, the lesions can cause an alteration in smell, cause nasal obstruction or even bleeding. In the oral cavity, the lesions are usually noted on routine dental examination."
May is Melanoma Awareness Month, and Reimel and his family are hoping to spread awareness about the rare melanoma. They’re hosting a Marcus Cancervive Fundraiser Birthday Bash on June 22 to offset his medical and travel costs. The event will be from 11 a.m. to 2 p.m. at the Saint Louis Alumni Clubhouse.
Reimel and his wife Noreen, 40, communications manager at Ulupono Initiative, have a blended family that includes three sons, Cheynne Reimel, 13, Tyler Kam, 10, and Sage Reimel, 8. Their "furry children" — Turbo, a 12-year old papillon, and Coco, a 3-year-old mini dachshund/ Chihuahua mix — provide stress relief for the family.
"When I returned home from our visit to UCLA last month … and he remained up in Los Angeles, it was nice to come home to them," said Noreen Reimel of the pets. "They helped to keep me distracted and they provide unconditional love for us and our boys."
As a result of Reimel’s medical challenges, the entire family has made lifestyle changes including adopting a vegan diet.
"We stopped eating animal products. We’re not strict vegans and slide once in a while," he said. "Noreen and I aren’t the greatest cooks, but we’ve been cooking together. I’ve lost 40 pounds, going from 225 to 185 since starting this diet. I don’t get bloated after meals."
The family goes on regular hikes and enjoys the outdoors. Reimel wants to maintain as much normalcy as possible despite a grim prognosis that there is only a 25 percent chance he’ll be alive in five years.
"Right now I’m not in treatment, so life feels normal," he said.
He works as a videographer for the Queen’s Medical Center, where he shoots and edits commercials. He previously worked as a news videographer for KHNL and KHON.
Reimel hopes to continue working full time as he goes through treatment to boost his immune system. He was scheduled to take part in a clinical trial at UCLA for an intravenous drug called Anti-PD-1, but after intense screening he was told he didn’t qualify for the study because his tumor was not quite large enough.
Yervoy, another intravenous drug, is his next option but the treatment is $120,000. After insurance, the Reimels are looking at a minimum of $12,000 in out-of-pocket expenses.
While taking the treatment, he will be monitored for stomach pain, headaches, skin rashes, dehydration, fever and infection. It’s not an easy road ahead, but Reimel is hoping to beat the odds.
"I don’t want to sit still and not fight. I still feel like a whole person," he said. "I’ve never been a negative person and don’t see myself as a victim. I need to live life, enjoy life."
MELANOMA AWARENESS MONTH
Melvin Palalay, a medical oncologist with OnCare Hawaii Inc., says an estimated 233 new melanoma cases were reported in Hawaii in 2010, with 23 deaths from the disease, according to the University of Hawaii Cancer Center.
“It should be noted that all ethnic groups are at risk for melanoma, not just the light-skinned, blond, blue-eyed demographic,” he said. “In the darker-complexioned groups, we see more cases of acral melanoma, a type of melanoma that can occur along the palms and soles and underneath the nail beds of the extremities.” He advises looking for the “ABCDE” signs of melanoma:
» A for asymmetrical lesions » B for border irregularity of lesions » C for color differences » D for a lesion diameter greater than a quarter-inch » E for evolving lesions that are changing in size or number or developing new symptoms, such as bleeding or crusting
To reduce the risk of melanoma, Palalay says to “slip, slap, slop, wrap,” a slogan developed by the American Cancer Society to remind people to slip on a hat when outdoors, slap on protective clothing, slop on sunscreen and wrap eyes with a good pair of sunglasses.
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