How Josh Overcame Myelofibrosis with a Cord Blood Transplant
In 2007, Josh Gelman was diagnosed with a rare blood disorder called essential thrombocythemia. Seven years later it took a rapid and serious turn, and he found out he was on the verge of developing acute myeloid leukemia. MSK blood cancer doctors Raajit Rampal and Juliet Barker quickly made a plan that saved Josh’s life, and today, he’s doing well.
- Josh Gelman was diagnosed with essential thrombocythemia in 2007.
- In 2014, his condition progressed to myelofibrosis on the verge of becoming acute myeloid leukemia.
- Josh connected with MSK myelofibrosis expert Raajit Rampal, who recommended a stem cell transplant. But there was one catch: Josh didn’t have a match for his tissue type.
- MSK’s Juliet Barker was able to perform the transplant using an innovative procedure called a cord blood transplant. Cord blood comes from the umbilical cord and placenta of healthy newborns. It is donated by the baby’s parents at birth.
- After a few setbacks, today Josh is healthy.
Josh Gelman was diagnosed with a rare blood cancer in 2014. But his story begins nearly two decades earlier, in the summer of 1998. The television producer was doing a story on a 12-year-old girl named Colby who was undergoing treatment for leukemia. Josh spent a great deal of time with Colby and formed a lasting bond with her family.
“The experience made a deep impression on me,” says Josh, now 59. He became a regular platelet donor after meeting Colby and stayed in touch with her family even after she died the following summer.
Nine years later, the native New Yorker was preparing to give platelets in Memorial Sloan Kettering’s Blood Donor Room when he got an inkling that something might be wrong with his own blood. “They plugged me in to the machine and then unplugged me right away,” Josh recalls. “A doctor came in and said, ‘You need to see a hematologist.’ ”
Josh was diagnosed with essential thrombocythemia (ET), a condition involving the blood and bone marrow. He was told that with medication it would be easy to live with, but there was a slim chance that the ET could progress to myelofibrosis or, even more seriously, acute myeloid leukemia (AML). In 2014, seven years after that fateful day in the MSK Blood Donor Room, Josh was diagnosed with myelofibrosis on the verge of becoming AML.
Deciding on a Transplant at MSK
A seasoned journalist, Josh did his homework. He sought the opinions of multiple experts, including ones at MSK. After extensive research with his then-fiancé, Christina, Josh began drug therapy at another Manhattan hospital. But as his condition worsened, Josh returned to MSK for a second appointment with myelofibrosis expert Raajit Rampal.
“By that point, Josh had advanced disease,” recalls Dr. Rampal, who did a full workup and explained that a stem cell transplant from a donor was Josh’s best chance at survival. “Transplant is the only curative approach for myelofibrosis that we know of right now,” Dr. Rampal notes. “Not everyone should have a transplant, but that’s what was best for Josh. He was a young and otherwise healthy guy, so I felt very optimistic.”
Dr. Rampal’s role was to keep the disease under control so that Josh would be ready for his transplant. But there was one major obstacle. No one in Josh’s family had a tissue type that matched his, nor was there a match from any unrelated adult donors in Be the Match or other registries. And given the rapid progression of his disease, there was no time to spare.
Going the Route of Cord Blood
Enter transplant specialist Juliet Barker. She is Director of MSK’s Cord Blood Transplant Program and one of the world’s leading experts in cord blood transplants. Cord blood comes from the umbilical cord and placenta of healthy newborns. It is donated by the baby’s parents at birth and is a good source of blood-forming stem cells for people who do not have a readily available matched adult donor.
Dr. Barker explains that part of the reason there was difficulty finding a match for Josh was his Eastern European ancestry. “People of northwestern European ancestry are more likely to have a donor,” says Dr. Barker. “For everyone else, the likelihood is much less.” But cord blood provides an alternative. “The stringency of the requirement for the match is reduced if you’re using cells from a newborn,” she says.
The other advantage is that cord blood is frozen in public banks so there is very little wait time. Dr. Barker and her team found two cord blood stem cell sources right away. Because cord blood has fewer stem cells, using cells from two donors offers a greater chance of success.
“The Nurses Felt Like Family”
Treatment began with outpatient chemotherapy under the care of Dr. Rampal. But the disease was advancing to leukemia so quickly that Josh was admitted to Memorial Hospital for more-intensive chemo in an attempt to wipe out the leukemia cells before the transplant. As his condition stabilized, Josh walked the halls to build strength and played guitar with the music therapists who visited regularly. “The morale on the floor was really great,” he recalls. “The nurses felt like family.”
In January 2015, Josh was transferred to the bone marrow transplant unit and had a cord blood transplant under the care of Dr. Barker. It was the first cord blood transplant performed in someone with myelofibrosis. “It was a relatively new approach for a diagnosis like Josh’s,” says Dr. Barker. “But because we had the experience of doing these transplants for other blood cancers, we were able to figure out a strategy specifically for him.”
Josh spent many weeks in the hospital. Slowly, his blood counts started to go up, and he regained strength. Eventually, Josh returned to his Manhattan apartment, welcomed home by Christina and her six-year-old daughter, Eva. He had to follow strict hygiene guidelines and a low-microbial diet to avoid infection.
Recovering at Home
The next year had its ups and downs, with frequent visits to the bone marrow transplant outpatient clinic. Josh returned to work, but he suffered a few serious setbacks, including a bad case of pneumonia, which landed him back in the hospital.
“I had a hard time adjusting to the world at first,” Josh says. “I became really worried about germs, which is a tough thing in New York City. Any headache, any pain, and I would start to worry that something was wrong.”
But he pressed on. “I’m a strong believer in taking things one step at a time,” he says. “I just told myself that all I have to do is take the next step. I never worried about how I was going to get over the finish line.”
An avid runner, Josh began to take more of those next steps as his health improved. He set his sights on the Brooklyn Half Marathon, which he completed in May 2017. Also that spring, he and Christina were finally married.
“Josh made a huge turnaround,” says Dr. Rampal. “He probably couldn’t have gotten such expert care anywhere else. But what had the biggest impact on me was the day he swung by the clinic to tell us he got married. That really made my day. This is why I do what I do.”
Life after Myelofibrosis
Today, Josh is back to his normal life. He now receives follow-up care twice a year with Dr. Barker. “I consider myself the luckiest guy in the world,” says Josh. “I have no doubt that the incredible care I received at MSK saved my life.
“There’s nothing I can’t do that I was doing before my illness,” he continues. This summer he vacationed with his family in Italy, went on his annual fishing trip to Montana, and began training for the Staten Island Half Marathon.
“The only thing I haven’t done is eat raw oysters.” Josh pauses and laughs. “I’m pretty sure Dr. Barker wouldn’t like me eating oysters anyway.”