Local Leukemia Patients Struggle with the Shortage of Asian Bone-Marrow Donors

A Bone Marrow to Pick
Westminster native Matthew Nguyen’s battle with leukemia highlights the critical shortage of Asians registered as bone-marrow donors

The only sounds inside the white, almost painfully sterile room come from the hushed voices of the nurses outside and the beeping of monitors inside. If you want to come in, you have to put on a mask and gloves. Watching TV inside this City of Hope hospital room is 27-year-old Matthew Nguyen. The Westminster native looks the picture of health: well-fed, vibrant, young, with a wry sense of humor.

And yet he is trapped in this room in the San Gabriel Valley city of Duarte. Nguyen has leukemia, and at the moment, he has no immune system. The latest round of chemotherapy killed all of Nguyen’s bone marrow. Something as simple as a cold could lead to something worse, such as a fever, and set back his treatment. His routine here consists of blood tests, blood transfusions, insulin shots (the chemotherapy has made him diabetic) and finding some way of passing the time.

“Basically, all I have are my computers and movies,” he says. “I’m in here all day long, and I get cabin fever, and I want to get out, but I can’t.”

Nguyen, like many people with leukemia, needs a bone-marrow transplant. But he has a problem, one that prevents him from easily finding a match: He’s Vietnamese.

The National Marrow Donor Program (NMDP) has more than 7 million people registered in the United States alone. Unlike most organ transplants, like heart or kidney, in which blood type is taken into account in addition to ethnicity, bone-marrow transplants rely exclusively on finding a donor of a similar ethnic background. Nguyen would most likely find a bone-marrow match within members of the Vietnamese population. But out of those 7 million donors, only 30 percent come from minority groups; of them, only 17,000 are Vietnamese.

So far, Nguyen has struck out with the available donors. The only way to increase his odds is to find and register more donors—a task, ironically, that Nguyen worked on during college.

Helping him in his search is Asians for Miracle Marrow Matches (A3M), an organization dedicated to raising awareness of the need for more minority groups within the bone-marrow registry; the Project Swab, a group formed this year by Anaheim native Thao Tran (full disclosure: Tran is the author’s sister), dedicated to supporting Vietnamese blood-cancer patients; and his own support group, Team Matthew.

*     *     *

Nguyen was born in Westminster, and like many California-born sons, he loves the beach. His undergraduate-college years were spent at UCLA, where he majored in pre-med and met his fiancee, Chloe Nguyen (no relation).

During those years, he spent his free time volunteering at bone-marrow drives, unaware he was building a larger donor pool for himself.

During his second year at pharmacy school in Virginia in 2007, after a trip to Fountain Valley hospital for a bloody nose that would not stop, Nguyen found out about his illness. “That’s when they tested the blood, and they made everybody wear masks. They didn’t tell me anything,” he recalls. “And they isolated me in a room. After they isolated me, I remember—this is horrible—the doctor walks by [and says], ‘You probably have leukemia,’ and he just kept going.”

Nguyen was subsequently diagnosed with acute myelogenous leukemia, a cancer of the blood that affects the production of white blood cells. According to Dr. Willis Navarro, the medical director for bone-marrow transplants for the NMDP, the way leukemia works is that “[one of] the cells within the bone marrow . . . changes and becomes malignant. When the malignant cells begin to grow, it crowds out the normal cells within the bone marrow, which causes a problem with bone-marrow production of blood.”

After 16 months and five rounds of chemotherapy, as well as an onset of gastritis, pancreatitis and a lung infection, Nguyen’s tests came back clean. It seemed the leukemia had been destroyed; things were starting to look normal again. Yet this past February, a routine bone-marrow biopsy revealed the unsettling news that the cancer had returned, this time more aggressively. Nguyen would need a bone-marrow transplant if he wanted a chance of a full recovery.

That’s when the search began and Team Matthew was born, intent on finding Nguyen—as well as other Vietnamese patients—a bone-marrow match. Team Matthew has been holding marrow drives while working closely with A3M. According to Madhuri Mistry, A3M’s community-relations manager, the organization has recently started focusing on Vietnamese patients, primarily in Orange County, which has the largest Vietnamese population outside of Vietnam (135,548 people, according to the 2000 Census).

Founded in 1991, A3M originally focused on the Asian population. “As we continued with our work, we realized that African-American communities, mixed-raced communities, and Hispanic communities need to increase their donor base, so we now work in all of those communities in California and across the nation,” Mistry says. The group holds marrow drives exclusively within Southern California.

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  • Julie Velazquez 04/03/2010 10:45:00 AM

    Hello; I was very touched by your story! Your story and mine sound identical! I recently found out that I have relapsed with APL Leukemia and that I need to start a daily IV of Arsenic Treatments and chemotherapy and radiation. I too will undergo a Bone Marrow Transplant! I feel so scared and my whole life has too a big U turn. I too was in College and would have graduated in November, and I too am a Medical student. I have a husband and two beautiful Children and I just knowing the pain and fear I am about to endure again has made me depressed. I have undergone two bone marrow biopsy's in the last month, and my cancer is progressing rapidly. It is so tuff to be in a hospital room isolated from the world we know and kept away from the people we love. My heart goes out to you; and I pray that you find a donor soon! Stay Strong as I join you in knowing what your feeling and you are not alone! God Bless you!

  • Nguyen 09/09/2009 10:16:00 PM

    it really touches my heart when i read this from Matt "�You see all your friends getting married and finishing school, and you�re stuck. You can�t really continue, and you don�t know what to do,� he says. �It�s very frustrating.�" I am with you and will do everything I can to take you back to the road you were in ...

  • Victoria Namkung 09/02/2009 1:56:00 AM

    I am a stem cell donor and have followed Matthew's story. I can't say enough about how easy it is to donate and save a life! It's been the best thing I have ever done in life. Just go to BetheMatch.org to join the registry!

  • Bea 08/29/2009 6:56:00 AM

    I wish you the best of luck. My friend is at Johns Hopkins right now. They are going to use his parents bone marrow. A Haplo transplant. Are your parents available? Maybe it is something that could work for you. I have heard that Seattle and Johns Hopkins are the two best places to get treatment for bone marrow transplants. Look for all options. You can WIN!

  • Bea 08/29/2009 6:56:00 AM

    I wish you the best of luck. My friend is at Johns Hopkins right now. They are going to use his parents bone marrow. A Haplo transplant. Are your parents available? Maybe it is something that could work for you. I have heard that Seattle and Johns Hopkins are the two best places to get treatment for bone marrow transplants. Look for all options. You can WIN!

  • James Nguyen 08/28/2009 6:23:00 AM

    Keep faith Matt...God will answer all our prayers.

 

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