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At the end of 2021, 22-year-old Johanna Mendoza was on vacation in Mexico when she noticed a small red spot on her wrist.
“I thought maybe I ate something that wasn’t good for me,” the 25-year-old from Inglewood, Calif., told TODAY.com.
Then spots started appearing elsewhere on her body. Upon her return home, she visited the emergency department, where she was diagnosed with acute lymphoblastic leukemia (ALL). She was told that her treatment would require a blood stem cell transplant.
“I was really surprised,” she says. “(It) was definitely scary.”
Red spots on the skin reveal cancer
Mendoza had never had serious allergies, but when she first noticed red spots on her wrist, she wondered if that could be the cause.
“I thought maybe I was having a reaction to something I ate,” she explains. “That was strange.”
Then, red spots appeared all over her body. “That made me worried,” Mendoza said.
A day or so later, she went to a doctor in Mexico, where blood tests revealed she had low platelets (cells in the blood that help clot) and that low levels could indicate a medical problem. I have been told.
At the end of her vacation, Mendoza returned to California and visited the emergency room in early 2022. Doctors there also conducted tests, but were troubled by the results.
“They actually told me I couldn’t go home. They wanted me to stay overnight so they could do more blood tests,” Mendoza recalled. After further tests, Mendoza remembers the doctor saying, “We see something concerning, but we don’t want to say anything yet until we get a positive result.”
Mendoza soon learned that she had ALL, an aggressive cancer of the blood and bone marrow. Initially, she had to undergo multiple blood transfusions to increase her platelet count and she was hospitalized for over two months.
“My platelets were very low,” she says. “I’m locked in a room.”
Hospital isolation also protected her, as her immune system was compromised. Her doctors worried that if she developed an infection, her condition would worsen.
She understood why it was important to stay in the hospital, but she struggled at times. “It was definitely very difficult for me,” Mendoza says.
Once her platelet count was high enough, she was sent home. However, she still needed to undergo chemotherapy and a bone marrow transplant. Initially, she thought her twin sister could be a donor, but it turned out they weren’t really a good match.
They considered her half-brother as a potential donor, but he was also not a good match. Her doctors enrolled her in a clinical trial to see if she was a partial match for people who need a bone marrow transplant.
“We actually found it right away, which was shocking,” Mendoza said. “I thought it was going to be a longer process.”
Partial bone marrow match
When it comes to bone marrow transplants, also known as stem cell transplants, finding a match can be difficult. Stem cells are primarily found in the bone marrow, the center of bones.
Traditionally, these transplants require the donor and recipient to share HLA types. According to the Democratic Party, formerly known as the National Marrow Donor Program and Be The Match. HLA is a type of protein that is present in most cells throughout the body. According to Dr. Stephen Devine, an exact match, which has long been the standard, means a match on eight out of eight HLA markers. However, finding an exact match can be difficult.
“Not everyone will be able to find a match,” the chief medical officer of NMDP, which sponsored the clinical trial in which Mendoza participated, told TODAY.com. “Outcomes are better if a matched sibling or unrelated donor is used to undergo the transplant.”
But Devine says only 30% of patients have a family match. Finding a random match can be time consuming and difficult depending on a person’s ethnicity. For example, a white person has an 80% chance of finding a match on the donor registry, but a black person only has a 29% chance of finding a match, and an Asian or Hispanic person like Mendoza has a slightly less than 50% chance.
“There is a huge gap in the likelihood of finding a donor that was previously thought to be a perfect match,” Devine says.
To address the access gap, NMDP led a trial to see if people could receive a partial match and still have successful outcomes.
“We said, ‘We’ve got to find a way to improve outcomes with donors that aren’t perfect matches,'” Devine recalls.
If the donor is not a perfect match, patients can experience so-called graft-versus-host disease (GVHD), he says. This occurs when donor cells attack recipient tissue. National Institutes of Health. It affects multiple systems in the body and can range in severity from mild to life-threatening. Leukemia and Lymphoma Society Say.
“Traditionally, if the donor is not a perfect match, the incidence of GVHD is much higher,” Devine says.
The clinical trial Mendoza participated in examined whether GVHD could be prevented by administering the chemotherapy drug cyclophosphamide on days 3 and 4 after a stem cell transplant. Giving drugs after a transplant makes the body more comfortable and prevents a reaction from the donor’s T cells, a part of the immune system that contributes to graft-versus-host disease, Devine said.
“That way, even if you use a perfectly mismatched donor, the risk of graft-versus-host disease actually decreases significantly,” Devine says. “That was a game changer.”
It may also have applications in areas other than cancer, such as anemia and sickle cell disease.
Although trials investigating post-transplant cyclophosphamide in adults have been completed, researchers are still investigating this in the pediatric population. Adult patients not currently participating in the study can also undergo this protocol if an exact match cannot be found. Devine said he has performed transplants on seven out of eight people with at least five matches for HLA markers.
“It’s already the standard of care in our field right now,” Devine says. “This means more people could potentially receive life-saving blood or bone marrow transplants.”
participating in an incomplete match
Katherine Vega submitted a saliva sample to Be The Match when she was a freshman in college. Then she forgot about it. Five years later, she received a call saying she had been matched with a stranger.
“I had no hesitation,” Vega, 24, of San Antonio, Texas, told TODAY.com. “That’s what I had to do. If I can help someone, I will.”
In some stem cell transplants, the donor is put to sleep under general anesthesia and a thick needle is inserted into the lower back to remove the bone marrow. According to the American Cancer Society. Donors may also take drugs that help stem cells move quickly from the bone marrow to the blood so that they can be extracted directly from the blood.
After undergoing blood tests to see if he could donate, he received several days of injections to stimulate the production of blood cells and stem cells in his body. On the day of her donation, she went to the hospital and sat there for eight hours.
“There’s obviously a needle in his arm that takes blood out and injects blood (to remove stem cells),” she said. “I slept most of the time. It was pretty cold.”
The next day she drove 4 hours to come back and finish.
“They take a bag of stem cells, transfer it and go,” she says. “And that’s it.”
Before undergoing a bone marrow transplant on December 9, 2022, Mendoza underwent two months of 24/7 chemotherapy. When I went in for her transplant, I was surprised that she only had to receive six bags of fluids and it wasn’t a surgical procedure.
“The whole process was smooth,” she says. “I think it took about an hour.”
Mendoza received a post-transplant cyclophosphamide and had to be isolated at the hospital to avoid infection until the donated stem cells could be passed on. That meant lots of blood tests and waiting.
“It takes about two to three weeks. You have to be patient,” she says. “I obviously didn’t have the patience.”
Luckily, she experienced a “Christmas miracle” and was able to return home on Christmas Eve.
“Transplant is the goal,” she says. “After I got the transplant, I thought, ‘Okay, I’m going to be okay.'”
Mendoza underwent a bone marrow biopsy 100 days after the transplant and is now cancer-free. She shares her own story to encourage others facing her difficulties.
“Life will throw you curveballs, but just because it throws you a curveball doesn’t mean you have to give up,” she says. “Keep going, keep crushing.”
Correction (March 7, 2024, 10:17 a.m. ET): A previous version of this article misstated the definition of graft-versus-host disease. This occurs when donor cells attack recipient cells, not when recipient cells attack donor cells.
