Twenty years ago, one of Dr. Woody Smith’s friends died of kidney cancer so he decided to do an ultrasound of his own kidneys.
His kidneys turned out to be fine, but his spleen was large. That finding eventually would lead to a diagnosis of an uncommon blood cell cancer, myelofibrosis, which disrupts the body’s normal production of blood cells.
As Smith, an interventional radiologist who retired from Roper St. Francis Healthcare in March, prepares for a potentially life-saving transplant, he and his wife, Joan, are raising awareness of the need for more bone marrow and stem cell transplant donors. Most people are familiar with the concept of donating organs or blood, but bone marrow donation is equally as important and the process is relatively simple, Smith said.
“Finding a donor is the single most important part of the whole complex transplant process,” he said. “Without it, it all falls apart. If you don’t have a reasonable match, you can’t have a transplant. I would be in trouble if there were no matches. That’s essentially a death sentence.”
BECOME A DONOR
Anyone can start the process to becoming a donor by going to join.bethematch.org and completing a 10-minute registration process. Once you’re finished, a cheek swab kit will be mailed to you for free if you are 18-44, and for $100 if you are 45-60. Joining the registry doesn’t obligate you to donate; you can make that decision if/when you’re contacted by the registry. About one in 430 volunteers will go on to donate.
It’s particularly important for minorities, including African Americans, Asians and Hispanics, to register because that donor pool is small, Smith said.
Be the Match was one of the registries searched by the Seattle Cancer Care Alliance, where Smith will go for his transplant. He was a roughly 90 percent match with his donor, which was close enough to be considered essentially perfect. The Seattle Cancer Care Alliance will continue scanning donors up until the days before his transplant to see whether a better match exists.
Dr. George Geils Jr., a hematologist/oncologist at Roper St. Francis Healthcare and medical director for the Roper St. Francis bone marrow transplant program, said Roper St. Francis Healthcare does not use stem cells or bone marrow from a national registry because it does not perform transplants from unrelated donors.
“It’s a rare need, so for patients who have that rare need, we encourage them to seek a center of excellence, such as the Seattle program,” Geils said.
Most of the transplants performed by Roper St. Francis Healthcare can be done with either the patient’s own stem cells or those from a relative such as a child, sibling or niece/nephew. It’s much less common that patients have to seek unrelated donors, he said.
“For patients who do not have a related donor, the unrelated donor source is life-saving,” Geils said.
There is no cure for Smith’s kind of cancer, and up until 2010, he lived without symptoms. His spleen, however, had been slowly growing, and he started losing weight that year because his spleen was squeezing his stomach and he couldn’t eat.
He already had toured the country’s top transplant centers, so he reached out to the Mayo Clinic about participating in a potential drug trial that would shrink his spleen.
By the end of his second day of treatment on the trial drug, he told his wife he felt hungry and that he wanted a cheeseburger. She went to Wendy’s and got him a cheeseburger and fries, and he ate all of it – the first time that had happened in months.
“I’ll never forget it,” his wife said. “That was awesome.”
Smith gained back the weight he had lost, and for the next 10 years, he made 55 trips to the Mayo Clinic – once every three months – for research-dictated checkups and to receive more treatment.
Last fall, however, his doctor noticed his spleen was starting to get bigger, meaning he had outgrown the study drug, and the only option was a stem cell transplant.
NEXT STEPS FOR WOODY
The Seattle facility put potential transplants temporarily on hold during the height of restrictions because of COVID-19, but the Smiths received a call in late March that a potential donor had emerged and they were ready to move forward with the process.
Smith’s path forward will involve the removal of his spleen, which has become enlarged because of the cancer, as well as a course of treatment on chemotherapy drugs to kill off existing cancerous bone marrow cells, to then the infusion of healthy donor cells and daily monitoring for 100 days to see whether they begin to grow and reproduce more healthy cells. The entire process should take about six months.
“It’s a complex and scary process, but the process doesn’t occur if you don’t have a donor,” Smith said. “It’s so easy to do, and it’s so important.”