Returning home after a Father’s Day trip to New York City with his daughter in 2016, Scott Kesel thought he had come down with the flu. Bloodwork showed his blood platelets were lower than normal. He followed up with his regular physician and was given the news: he had chronic myelomonocytic leukemia (CMML).
CMML is a rare type of blood cancer that starts in the bone marrow, where blood cells are made. It can involve other areas of the body. There are only about 1,100 cases in the U.S. each year and it’s more common in people over age 60.
As a Canandaigua resident, Scott started his cancer journey at Wilmot Cancer Institute’s Sands Cancer Center at F.F. Thompson. His oncologist laid out all the options: chemo and a stem cell transplant.
He had chemotherapy at Wilmot, where he got to know the infusion nursing staff.
“They have put a mindset in place that’s so beneficial to the patient,” he says.
For a stem cell transplant, his brother was the closest match they could find, although he was only a half-match. That left the option for a haplo-identical transplant available. Historically, it was required to have a closer match in order to do a transplant. With a haploidentical transplant, the donor is only half-matched. It’s a newer procedure that is not available at all transplant centers, but the doctors at Wilmot have been performing the surgery since 2015.
He underwent the transplant but, unfortunately, in Scott’s case, it didn’t work.
For a short period, Scott went to another institution for a clinical trial. Unfortunately, that didn’t work either. He developed pancreatitis and had to drop out of the trial. He also experienced cold agglutinin disease, which caused his immune system to attack his red blood cells. Cold temperatures can trigger it and he had to stay at Wilmot for about a month in a temperature-controlled room, set at 80 degrees at all times, to overcome it.
Once that resolved, the team at Wilmot suggested another treatment option to try on Scott’s leukemia: a transplant with stem cells from an umbilical cord donation. Umbilical cord blood stem cells came from Australia and Spain to try to save Scott’s life. He had only two cord blood units available and he needed both to have a successful transplant, which was his only viable chance to potentially cure his leukemia. Along with the cord blood, he also had radiation therapy with Louis Constine, M.D.
He had nothing but good things to say about the team that took care of him while he was hospitalized on Wilmot Cancer Center’s sixth floor, the Blood and Marrow Transplant Unit.
“It was exceptional. They were so friendly and accommodating right from the very beginning,” he says. “It wasn’t limited to nurses. There’s medical technicians on the floor that were so friendly and became very good friends.”
Thankfully, this time the transplant took. As of June 2022, Scott has been in remission for three-and-a-half years. He credits his team for getting him there.
“It’s an incredible group of people,” he says.
But it’s not just his team he’s grateful for. He appreciates that his life has returned basically back to normal, despite the tumultuous COVID pandemic that happened shortly after his transplant.
He’s gotten back to work and to hobbies he enjoys outside work.
“I happen to be the world’s greatest tuba playing car salesman,” he jokes.
This summer and fall, he has 28 gigs lined up, with different music groups around the region to keep him busy, and he looks forward to hunting and fishing during his free time.
For it all, he feels fortunate.
“You have to be grateful for the outcome,” he says. “I got a lot of support remotely from people in my community who used the opportunity to promote bone marrow registration and blood drives, which was awful nice.”
He adds, “I’m grateful that I ended up at Wilmot. I really couldn’t have been in a better place.”