By RYOKO NAKAMURA
Rafu Japanese Staff Writer
The third in a four part series.
Working as an owner of an event planning company, Randy Masada is always on the go. Nothing slows him down, until he received a phone call from A3M– Asians for Miracle Marrow Matches–notifying him that he might be a possible match for a bone marrow transplant. It was about seven years ago at a Nikkei basketball tournament when he registered through A3M.
“Although I heard my friend’s brother had leukemia and received a bone marrow transplant from his mom, I didn’t know much about it because I was young,” Masada explained. He learned about registering and what it meant for both him as a donor and a possible patient down the road from A3M.
“The registration was easy and simple. I thought of being able to save a life and make a difference so I didn’t have any hesitation,” he said. At the beginning of this year, a call from A3M came out of nowhere.
“After so many years, you forget about it. Every time I’d see signs like a donor drive, it reminded me, but everyday life goes on.”
It surprised him at first, but “the fact that I could help somebody, I pretty much had my mind set as soon as I found out.”
Masada watched a video sent to him by Be the Match to learn more about the procedure. His parents, Gary and June Masada, were a little worried, but supportive, and didn’t want him to feel pressure either way.
“I understand that a lot of people are scared to have anesthesia (if the procedure is marrow donation) or just do this whole process,” Masada said. “I don’t think it’s anything to be ashamed
of for people who haven’t done it, but I just knew I wanted to do it.”
As soon as he told Be the Match he would be a donor, he was sent to a clinic for more blood tests and physical check-ups. After five clinic visits, the procedure date was set and he was told that his match was a woman in her 60s.
In Masada’s case, the doctor requested a marrow donation, which is a surgical procedure performed in a hospital with general or regional anesthesia, unlike PBSCT, a non-surgical outpatient procedure to collect blood-forming cells. It took a little over a month from the notification to the surgery day.
“I was fine until the week of surgery and then it started to hit me,” he recalled. “Honestly, the night before, I was a little nervous and didn’t sleep much, just thinking about the whole thing.”
He hoped everything would go well, but “another thing I was worried about was that there’s still a chance it’s not going to help the patient. Her body may reject the transplant.”
Patients’ Biggest Risk is Rejection
According to Dr. Yutaka Niihara, a clinical professor of medicine at UCLA who specializes in internal medicine, hematology and oncology, adult patients who suffer from acute lymphocytic leukemia (ALL) have a survival rate of 40 percent during the first five years of the disease. Those who suffer from acute myelogenou leukemia (AML) have only a 20 percent survival rate. With an allogeneic transplant, the survival probability for patients younger than 40 years old is approximately 50 percent for either of the above diagnoses.
Complications from chemotherapy include nausea, vomiting, hair loss, fatigue, pain, mucositis, skin irritation, and organ damage or failure.
“The riskiest complication after transplantation is rejection,” Dr. Niihara explained. With bone marrow or PBSCT, the rejection can go two ways. Just as with other organ transplantation, such as a kidney, a patient’s body may reject the newly transplanted cells.
Alternatively, the newly transplanted marrow may reject the patient’s entire body as the transplanted bone marrow or stem cells develop a new immune system. This is called graft vs. host disease.
“Either type of rejection can be life-threatening for a patient,” said Dr. Niihara.
Severe graft vs. host disease causes ulcers everywhere, including within internal organs and on the skin. Patients often look as if they have suffered severe burns on their entire bodies. Immunosuppressive drugs are routinely used to manage this. Unfortunately, this increases susceptibility for infection.
“The first 100 days are the most crucial,” said Dr. Niihara. Ironically, he also explained that a certain controlled level of graft vs. host is needed to fight against nests of cancer cells.
Risks For Donors
For a surgical marrow donation procedure, the most significant risk involves general anesthesia with a mortality rate of three to five per million. Another potential risk is infection from multiple needle punctures to the hipbones.
With PBSCT, the risk is much smaller for the donor. No general anesthesia or multiple needle punctures are required for this procedure. Dr. Niihara advises donors to make their own decisions, considering both the benefits and the risks. The decision should not be made under pressure from others. As a doctor who treats patients, he greatly appreciates those who are willing to volunteer to help others.
“Donors are precious,” Dr. Niihara insisted.
Never Give Up: Randy Masada
Masada had a full understanding of the risks and the benefits. On the day of surgery, he arrived at the hospital with his parents at 6:30 in the morning. After a full check-up, he was sent to the operating room.
He doesn’t remember how long the surgery was, but clearly remembered feeling a sense of relief. After the surgery, he couldn’t turn in bed, bend over, and was only able to shuffle over to the bathroom.
“As far as pain goes, I would compare it to falling on my tail bone, like snow boarding or something like that,” Masada explained. “I was sore, but I could still move around. Not too bad.”
He was in bed for the first couple of days and it took about five days to resume normal activities. In his case, back pain wasn’t an issue, but throat soreness from a tube inserted for air during the surgery was.
Even though there were great sacrifices to be made, in terms of both his time and physical comfort, why was he determined to become a donor?
“Because everybody deserves a second chance,” he said.
Growing up playing basketball, he learned the importance of teamwork and never giving up. Becoming a donor was his way of sending a positive message to patients who have been battling against deadly diseases.
“Never give up hope or the strength to live,” Masada advised.
It’s been several months since his surgery. He hasn’t heard anything about the recipient from Be the Match yet, but they are going to keep him updated.
“It’s definitely not a walk in the park, but I don’t look at it as being that big of a pain. It’s about what I can do to help. And there is a chance that I may get asked to give more marrow. If that’s the case, I definitely would,” said Masada.
For more information about bone marrow transplants, call A3M at (213) 625-2802 ext. 103, or visit www.A3Mhope.org. You can also find more information on the National Marrow Donor Program at www.bethematch.org.
In the fourth and final installment, a grateful recipient tells how he survived leukemia thanks to a marrow transplant.