Alaska Native patients struggle to find bone marrow transplant matches

Alaska born Wendy Lythgoe-Snipes grew up an avid skier, spending her time on the slopes of Alyeska. She was good enough to join the elite skiers competing at Junior Olympics and junior nationals. As an athlete, her physical fitness was something that just was. Until it wasn't.

In 2002, Lythgoe-Snipes was diagnosed with Hodgkin's lymphoma. She was treated with a regimen that involved both chemotherapy and radiation, only to have the cancer recur a year and a half later. Lythgoe-Snipes then opted for a stem cell transplant using her own blood.

"I donated my own blood on a machine that separates blood from plasma," she said. Doctors then used chemotherapy to kill cancer cells, which also wiped out the bone marrow cells. The transplant followed where the donated blood-producing stem cells replaced cells that were wiped out. The treatment, while grueling, gave Lythgoe-Snipes six years of remission -- enough time for her to fall in love, get married and have a child.

"In 2011, I noticed my lymph nodes were swollen," she said. A PET scan and biopsy at Alaska Native Medical Center (ANMC) confirmed her third occurrence of cancer, Non-Hodgkin's lymphoma this time. Lythgoe-Snipes underwent chemotherapy yet again, which put her in short-lived remission.

"In February 2012, doctors found that the cancer had returned, stage 4 this time, which means it had infiltrated my bone marrow," said Lythgoe-Snipes.

With Lythgoe-Snipes' system already weakened, a stem cell transplant using her own blood was no longer an option. Dr. Matt Olnes, medical director for hematology and medical oncology at ANMC, was Lythgoe-Snipes' doctor at the time and felt stem cell transplant via a donor would be the best choice for treatment. The hospital, along with Seattle Cancer Care Alliance (SCCA), began seeking out potential donors. But they were unable to find a full match. The reason: Lythgoe-Snipes is Tlingit.

It's a challenge familiar to the providers who treat Alaska Native patients in need of stem cell transplants.

"It's less of a waiting list issue and more about a lack of availability of donors," said Olnes. "You want a donor to be matched with respect to their HLA typing, which are proteins on the cells of the body that vary within ethnic groups. Most donors in the registry are Northern European. Those of Alaska Native or American Indian descent have unique HLA patterns, which makes finding a donor problematic."

The first donor choice is usually a sibling, said Olnes, and parents or other relatives can sometimes be used as a partial match. Lythgoe-Snipes' parents were not good donor candidates as they had health issues of their own that could be compromised by donation.

SCCA eventually found some partial matches in donated umbilical blood, which Olnes said is often used now. They ended up using blood from two different umbilical blood donors in the transplant, another new practice that's seen some success at SCCA. Lythgoe-Snipes was given a 50/50 chance of the procedure working -- and she was determined to fight.

"Being a parent changes everything," she said. "I had to do this for my daughter's sake. If it wasn't for her, I don't know if I'd have fought so hard to get through it."

The transplant took place at SCCA, where the majority of ANMC patients go for such treatment. Afterward, Lythgoe-Snipes stayed in Seattle so her health could be monitored.

"I was taking upwards of 50 pills a day, along with IV fluids to stay hydrated and regular blood transfusions," she said.

One of the biggest challenges a transplant patient faces is a severely compromised immune system.

"The infusion itself is usually well-tolerated," Olnes said, "but afterwards, there is a period of time where the patient has no white blood cells to fight infection. A common cold can be deadly."

For Lythgoe-Snipes, the lack of immunities meant a complete lifestyle change.

"It's easy for a healthy adult to take for granted the ability to fight off germs," she said. "As a transplant patient, you don't have that luxury."

Lythgoe-Snipes couldn't leave her house without hand sanitizer and face masks, and food could have no cross-contamination. "I had specific cutting boards for meat, veggies and fruit. I had to use bleach on every surface when cleaning," she said. "Many times during recovery I would try to attend public events but found myself fearful and anxious the whole time."

Statistically, the benefits of treatment tend to outweigh the risks. Depending on the type of cancer, Olnes said the odds of long-term remission can be good: "With some of the less high risk forms of leukemia, there can be up to an 80 percent long-term survival rate. In others, long-term remission is much lower, 30 to 40 percent."

The good news? Lythgoe-Snipes has been in remission since August 2012 and is doing well.

"It's been a difficult journey. I've not only had to heal physically, but mentally," she said. "I still suffer from fatigue, and my immunity is like that of a 3-year-old child."

She also became postmenopausal; the infants whose cord blood she received were male, and as a result, she said, her blood type is now male B-positive and she can't produce estrogen.

Over the last year and a half, she has been weaned off all medications and now takes natural vitamins and supplements, and she works hard to maintain a healthy lifestyle. Most importantly, she tries to stay positive.

"My future is learning that I have one," Lythgoe-Snipes said. "My mom calls me tenacious, and I guess that's true. I've always said it's not how far you fall, but how far you bounce back. I'm inflating the ball and bouncing as high as I can. Life is what you make it. I intend to make mine wonderful."

The Alaska Native Medical Center is having a Marrow Donor Registry Drive for adults ages 18-60 on Tuesday, May 10, 7 a.m.-7 p.m. (or until the kits run out) in front of the craft shop on the first floor of the ANMC hospital (4315 Diplomacy Dr.). Visit the Facebook event page for more info. You can also visit Be The Match and sign up online.

This story was sponsored by Alaska Native Tribal Health Consortium, a nonprofit Tribal health organization designed to meet the unique health needs of more than 150,000 Alaska Native and American Indian people living in Alaska.?

This article was produced by the special content department of Alaska Dispatch News in collaboration with ANTHC. Contact the editor, Jamie Gonzales, at jgonzales@alaskadispatch.com. The ADN newsroom was not involved in its production.