Three years ago, Alex Tung, an adventurous outdoorsman and experienced surfer, was hit with news that was stronger than any wave he had ever encountered. The grim diagnosis of acute myelogenous leukemia (AML) handed to him in June 2014 came six months after receiving a clean bill of health from his annual physical examination.
“My symptoms were strange, but cancer or AML, was the furthest thing from my mind,” said Tung, who at the time of the diagnosis was 38 years old.
No cancer risk factors existed in his family.
AML is caused by damage to the DNA of developing cells in bone marrow.
“Red dots and large, dark bruises were showing up all over my body,” he said. “I would have nose bleeds and urinary bleeding after bathroom use.”
Tung later discovered that the decrease in platelets was the major result of the AML. Platelets, colorless blood cells, help blood clot by clumping and forming plugs in blood vessel injuries.
A blood test showed his white blood count at 217,000, while a healthy person has 6 -10,000 white blood cell count.
“The AML was reproducing cancer cells rapidly and my doctor recommended chemo immediately,” Tung said. In 24 hours, he began induction chemo treatment from June 26, 2014 until July 4, 2014.
“I suffered from fever, hair loss, sores in my throat, body chills and headaches,” Tung said.
After chemo, the next line of defense was a bone marrow transplant. Tung had FLT3 cells, which cannot be killed completely, and only a bone marrow transplant could be the life-saving procedure.
The American Society of Hematology research study found that newly diagnosed FLT3/ITD AML patients in the age range of 18 to 65 years receiving intensive cytarabine-based induction therapy generally achieve remission at or near the same rate as other AML patients. The average time to relapse is 6 to 7 months compared with 9 to 11 months for patients with other AML subtypes.
“There are 3 billion Chinese in the world, so there should be no problem to find a match for me,” said Tung, who later found out that it would not be easy to find a match.
The surprising fact as stated by the National Bone Marrow Registry, even with more than 12 million donors; the registry only meets the needs of 60 percent of Caucasians and 5 to 15 percent of minorities in the U.S. “After a six-month unsuccessful search for a bone marrow donor, I opted to enroll in a clinical trial at City of Hope that used stem cells from umbilical cord blood, instead of from bone marrow.”
According to the World Marrow Donor Association, an estimated 10,000 to 15,000 patients a year cannot find a donor that is a close enough match from among the more than 30 million donors listed in the global database. However, Tung, as a result from his experience of waiting for a match, discovered that Caucasians still have a wider selection and more options to choose from an average of 10 to 20 donors.
The bone marrow registry in the U.S. estimates that about 30 percent of the registered donors are minorities. When you get into each ethnic group, the numbers are much lower. Although 12 million people have signed up with the registry, only 7 percent are of Asian descent.
Cord blood and bone marrow transplants replace damaged cells in the body with new healthy cells. For years, research has shown that cord blood transplants are an advantageous alternative to a bone marrow transplant, mainly because a close match is not required.
The cord blood collection process, according to Bloodworks Northwest, is a completely painless procedure that does not interfere with the birth or with mother-and-child bonding following the delivery. Cord blood is only collected after the baby is born and the cord is clamped and cut. A needle is inserted into one of the veins in the umbilical cord, allowing the blood to flow through tubing into a collection bag. No blood is taken from the baby and there is no cost to donate.
UC Davis Health informs its patients that an exact match is less critical with cord blood because the newborn’s immune system is less developed.
“You need a 90 percent match for an adult donor,” Tung said. “With a baby’s cord blood, it only needs to be about a 60 percent match.” Tung was matched with two babies (one Vietnamese and one Hispanic).
Tung was infused with two other human beings and those stems cells would live inside of him for the rest of his life and keep him alive.
On Jan. 23, 2015, after Tung finished radiation and chemo, the stem cells were injected into his bloodstream.
“My most memorable encounter during treatment was the day of my double umbilical cord stem cell transplant,” Tung said.
“It took 19 days for the new stem cells to begin reproducing healthy platelets, white and red blood cells. The Hispanic baby cord blood was my life-saver.”
When the white blood cells reached a 500 count, he was released from the hospital. It finally leveled off to a normal level to increase to white blood cell count to closer to the normal level around 7K but still fluctuates.
“It’s been about a 2 and half year journey,” Tung said. “In spite of the complications, the transplant was a success.”
Tung is ranked in the 5 to 10 percentile for a successful transplant.
Tung now has the DNA from the Hispanic baby, which makes him a mixed race man.
“I have a brand new healthy immune system, free of cancer, because of that baby,” Tung said. “I consider the process as the rebirth of me (half man and half baby and half Chinese and half Hispanic).
“Minorities are grossly underrepresented in the world registry,” Tung said. “We need more awareness to encourage the minority communities to become marrow and cord blood donors.”
Cord blood stem cells are used to treat more than 80 life-threatening diseases and disorders, such as acute leukemia, chronic leukemia, high-risk solid tumors; Hodgkin’s and non-Hodgkin’s lymphoma, sickle cell disease and immune disorders.
“I am grateful for my mother who stood by me through this entire journey and my amazing Dr. Budde,” Tung said. Dr. Elizabeth Budde, an assistant professor in the Department of Hematology & Hematopoietic Cell Transplantation at City of Hope, is working to eradicate cancer through her research of immunotherapy for patients with lymphoma and leukemia.
Tung sees cancer as a blessing by changing his outlook and igniting a passion to share the importance of being a donor recipient with the world. He testified before the Senate Health Committee on why Senate Bill 23 should be passed to fund public cord blood donation so it will continue saving lives like his and to implement an infrastructure to collect the cord blood for the use by people who need the transplant.
Tung’s story is featured in “Mixed Match,” a multiple award-winning documentary about the challenges mixed race blood cancer patients face when trying to find a match for a stem cell transplant.
“I am a survivor because of mothers who registered and donated their babies’ umbilical cord blood and placenta for the use by cancer patients,” Tung said. “I am an advocate and encourage expecting mothers to consider signing up for the process before giving birth.”
Tung celebrated his 42nd birthday on Nov. 2. Ironically, November is National Marrow Awareness Month designed to celebrate and raise the awareness about the achievements of transplant physicians and researchers. It also recognizes and honors the stem cells and bone marrow donors who help give others a second chance at life.
On Jan. 23, 2018, Tung will celebrate his third “re-birth” anniversary for being cancer free.
American Society of Hematology – www.hematology.org
Bloodworks Northwest – www.bloodworksnw.org
City of Hope – www.cityofhope.org
Cord Blood Registry – www.cordblood.com
Cord for Life – www.cordforlife.com
Mayo Clinic – www.mayoclinic.org
National Bone Marrow Program – www.bethematch.org
UC Davis Health – www.ucdmc.ucdavis.edu/cordblood
World Marrow Donor Association – www.wmda.info
Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to firstname.lastname@example.org and look for her column in The Wave.