By Meghan Holohan -
TODAY
At the end of 2021, Johanna Mendoza, who was 22 years old at the time, was on vacation in Mexico when little red dots appeared on her wrist.
“I thought maybe I had eaten something that caused that reaction in my body,” the 25-year-old from Inglewood, California, told TODAY.com.
Then the spots began to appear in other places on his body.
When she returned home, she went to the emergency room and was diagnosed
with acute lymphocytic leukemia
(ALL).
She was told that she needed a stem cell transplant to combat the disease.
“I was very surprised,” he said, “I felt very afraid.”
Johanna Mendoza received an impartial donation of bone marrow from Catherine Vega, which treated her acute lymphocytic leukemia.
They both recently met at a conference.Courtesy NMDP
Red marks on the skin reveal cancer
Although Mendoza had never suffered from serious allergies, when the red spots appeared on her wrist she wondered if that was the cause.
“I thought maybe he was having some kind of reaction to something he had eaten,” he explained, “it was strange.”
Then red dots appeared all over his body: “That made me worry.”
About a day later he went to the doctor in Mexico and, after some blood tests, they assured him that he had low platelets, blood cells that help clotting and that, in low concentrations, can indicate a health problem.
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At the end of his vacation, Mendoza returned to California and went to an emergency room in early 2022. They performed tests and doctors were concerned about what they found.
“In fact, they told me I wouldn't be able to return home.
They wanted me to stay one night to have more blood tests,” she recalled.
After more tests, Mendoza said the doctor told him: “
I see something worrying
, but I don't want to tell you yet until I have a positive result.”
Shortly after, Mendoza learned that he had ALL,
a rapidly progressing cancer of the blood and bone marrow
.
At first, he had to receive numerous blood transfusions to boost his platelets.
He remained in the hospital for more than two months.
“My platelets were very low,” she said, “I couldn't leave the room.”
Being isolated in the hospital also protected her because her immune system was compromised.
Doctors were concerned that if she contracted an infection, her health could worsen.
Although he knew why it was important to stay in the hospital, he sometimes found it difficult.
“It was very hard,” she said.
When his platelets were high enough he was able to go home.
But she still had to undergo chemotherapy and a bone marrow transplant.
At first he thought his twin could be her donor, but they realized they weren't compatible.
Johanna Mendoza had to spend months in the hospital to undergo various treatments.
She was relieved when she finally received a stem cell transplant.Courtesy Johanna Mendoza
A half-brother was also considered as a possible donor but was not a match.
Doctors enrolled her in a clinical trial that sought
partially matched donors
for people who needed a bone marrow transplant.
“We found one very quickly, which was surprising,” Mendoza said, “I thought it was going to be longer.”
Partially compatible bone marrow
When it comes to bone marrow transplants, also called stem cell transplants, finding a compatible donor can be a difficult task.
Stem cells live mainly in the bone marrow, in the center of the bones.
Traditionally, these transplants require that the donor and recipient share an HLA (protein) type, according to the NMDP, formerly known as the National Marrow Donor Program and
Be The Match
.
HLAs are a type of protein found in most cells in the body.
A perfect match, which has long been the norm, means that all eight HLA markers match, said Dr. Steven Devine.
However, finding a perfect match can be challenging.
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“Not everyone can even find [someone they can be] compatible with,” the medical director of NMDP, which sponsored the clinical trial in which Mendoza participated, told TODAY.com.
“The results are better," he said, "if the transplant uses either a compatible sibling [...] or a donor with whom there is no family relationship but is a compatible volunteer.”
However, Devine stated that only
30% of patients have a compatible family donor
.
Finding one at random can take time and be difficult depending on the person's race.
Whites, for example, have an 80% chance of finding a compatible donor in a donor registry, while blacks have only 29% and Asians and Hispanics, like Mendoza, just under 50%.
“There is a big gap in the likelihood of finding what we historically would have considered a perfectly matched donor,” Devine explained.
To address these differences between human groups, the NMDP spearheaded a trial to see if patients could receive a partially matched donor and still achieve a satisfactory outcome.
“We said, 'Well, we have to find ways to improve outcomes by using donors who are not perfectly matched,'” Devine recalled.
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When the donor is not a perfect match, the patient can suffer from what is called
graft-versus-recipient disease
(GVHD).
It occurs when donor cells attack the tissue where they are placed, according to the National Institute of Health.
This disease affects several systems of the body and its severity varies from mild to potentially lethal, according to the Leukemia and Lymphoma Society.
“Traditionally, GVHD rates have been much higher if the donor [...] is not a complete match,” Devine stressed.
The clinical trial in which Mendoza participated analyzed whether administering the chemotherapy drug cyclophosphamide on the third and fourth day after a stem cell transplant could prevent GVHD.
According to Devine, administering this medication after the procedure makes the body more receptive and prevents the reaction of the donor's T cells, which are part of the immune system and contribute to graft-versus-recipient disease.
“Doing this substantially reduces the risk of graft-versus-recipient disease, even with a donor who is not a perfect match,” Devine said.
“This has changed the rules of the game,” she explained.
It could also have applications beyond cancer, such as anemia or sickle cell disease.
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Although the trial investigating post-transplant cyclophosphamide in adults has concluded, researchers continue to study it in children.
Now, adult patients who did not participate in the research can benefit from this protocol if they do not find a perfect match.
Devine explained that they have performed transplants in people with seven out of eight compatible HLA markers and even with only five.
“It's already becoming a norm in our field,” Devine said, “it means more people have the ability to access a life-saving blood or bone marrow transplant.”
An imperfect compatibility
When Catherine Vega was a freshman in college, she submitted a saliva sample to
Be The Match
.
She later forgot that she had done it.
Five years later, she received a call telling her that she was compatible with a stranger.
“I didn't think twice,” Vega, 24, of San Antonio, Texas, told TODAY.com.
“It's what I had to do.
If I can help anyone, I will,” she added.
Although Catherine Vega forgot that she had signed up to be part of the bone marrow donor registry, she immediately agreed to help a stranger when asked.Courtesy Catherine Vega
For some stem cell transplants, the donor receives general anesthesia and a large needle is inserted into the hip to remove bone marrow, according to the American Cancer Society.
In other cases, the donor takes medicines to help the stem cells move more quickly from the marrow to the blood so that they can be removed directly from the blood.
After undergoing blood tests to ensure he could donate, he received the injections for a few days to stimulate the production of blood cells and stem cells in the body.
On the day of the donation she went to the hospital, where she sat for eight hours.
“They stick needles in your arms, they take blood [to extract stem cells],” he said, “I slept most of the time.
“It was quite relaxing.”
The next day, he came back for four hours and was done.
“They take out the bags of stem cells, transfer them to you and that's it,” he said, “and that's it.”
Before receiving the bone marrow transplant on December 9, 2022, Mendoza underwent two months of chemotherapy for 24 hours for seven days.
When she went for the transplant, she was surprised that she only had to receive six bags of fluid and it wasn't a more surgical procedure.
“The whole process went smoothly,” he commented, “it was about an hour.”
After undergoing the transplant and receiving post-transplant cyclophosphamide, Mendoza needed to remain isolated in the hospital to avoid infection until the donated stem cells began working.
That meant a lot of blood tests.
“It takes between two and three weeks [...] and you have to be patient,” he said.
“I, of course, didn't have any,” she added.
“It takes about two to three weeks… and you have to be patient,” she says.
“I was definitely not patient.”
Luckily, he experienced a “Christmas miracle” and was able to return home on Christmas Eve.
“The transplant is the finish line
,” she explained, “once they did the transplant, I thought, 'everything is fine.'”
Mendoza underwent a bone marrow biopsy 100 days after the transplant and is now cancer-free.
She has shared her story to encourage others facing similar challenges.
“Life throws you a curveball, but that doesn't mean you have to give up,” she said.
“Go ahead and win,” she concluded.