Six Years Later: A New Normal
Eight and a half years ago, Steve Barber couldn’t imagine the life-changing challenge that lay ahead of him – or that it would take two strong women to help pull him through: his wife, Laura, and their South Tampa neighbor Kaaron Benson, MD, who directs Moffitt Cancer Center’s blood bank.
Steve, a successful ERISA tax attorney, and Laura, a Tampa native, married in April 2006. Life was ideal. The couple enjoyed traveling, gardening and college football. They felt fortunate to live on a tree-lined street near the church where they married and where they were surrounded by business colleagues and friends. They both enjoyed being active – Steve ran and Laura played tennis.
“I have tried to be active my entire life,” says Steve. “For many years, I regularly ran four miles a day and would run races on the weekend.”
Steve began to suspect something was wrong as the distances he could run without stopping or getting short of breath dwindled from four miles to two or less.
Little did he know the visit to his internist in March 2010 would mark the beginning of an eight-plus-year journey that would test his perseverance and resilience. Nor did Laura realize what ultimately would be required of her as Steve’s caregiver. She detailed their journey in a blog for friends and loved ones, with entries both hopeful and poignant.
Steve’s hemoglobin count was low and continued to drop. Hemoglobin carries oxygen throughout the body, so it was no wonder he felt so tired. “Things we take for granted, like walking upstairs and just your daily activities became more difficult,” said Steve.
Various tests were ordered in an effort to diagnose the cause. Steve had his first bone marrow biopsy in late 2010. He underwent treatments, none of which seemed to help. He needed blood transfusions every other week.
In 2011, Steve was placed on Procrit therapy to treat multilineage dysplasia and refractory anemia, the lowest grade of myelodysplastic syndrome. Myelodysplastic syndrome (MDS) is an umbrella diagnosis that includes a group of disorders in which immature blood cells in the bone marrow do not develop into healthy blood cells.
Three Dozen Transfusions — And Counting
By August 2011, Steve’s hemoglobin count - normally between 13.5 and 17.5 in men, had dropped to six. He was referred to a world-renowned MDS research pioneer, Moffitt’s President and CEO Alan List, MD.
“I’d probably had close to 36 transfusions of blood before I saw Dr. List,” Steve said. All those transfusions caused a rare reaction for Steve but a common side effect. “I started breaking out in hives,” he recalled. “So I needed injections of Benadryl before each transfusion.”
Another complication ensued.
“Steve not only had common allergic reactions to the donor blood, he had also developed a red cell antibody,” said Benson. “Steve cannot just receive blood off the shelf. He requires specialized units, specialized testing.”
Though it happens in only about 1 percent of those who receive blood, patients can develop proteins called antibodies after exposure to donor red cells that their body can react to. “We have to give them blood that is compatible for those specific antibodies,” Benson explained. “In Steve’s case, he had developed a little ‘e’ antibody; we had to give him little ‘e’ negative blood.”
In fact, Steve had developed three different antibodies with differing potential impacts to his health. The little “e” antibody definitely was the worst. If, for example, a person like Steve got a blood transfusion with little “e” positive blood, “e” could destroy his red cells and in some rare cases could actually cause a very severe transfusion reaction.
“This is an example of why testing each patient carefully before blood transfusion is so very important — and why donated blood is so important, why we need a wide variety of blood donors: so that we can find those specialized units and have enough,” said Benson. “Without the blood transfusions, Steve would not have survived.”
List confirmed the diagnosis of low-grade MDS and in October 2011 placed Steve on a therapy called anti-thymocyte globulin (ATG) to suppress his immune system. It required five days of treatment in the hospital. He still needed blood transfusions and ongoing testing, but things appeared to settle down.
Biopsy Reveals Fast-Tracked Disease
In late April 2012, Steve was scheduled for a bone marrow biopsy to monitor the disease. He and Laura fully expected to hear positive news when List delivered the results days later. Unfortunately, that was not to be. Steve had progressed from low-grade MDS to a high-grade version of the stealthy disease. His white blood cell counts were low, making him vulnerable to infection. Steve’s fast-tracked disease could likely become leukemia within months, ultimately shortening his life.
“I felt sick to my stomach, especially when Dr. List proceeded to tell us the only known possible cure at this point is a bone marrow/stem cell transplant,” said Laura.
List referred Steve to Claudio Anasetti, MD, then chair of Moffitt’s Blood and Marrow Transplant and Cellular Immunotherapy Department. Steve’s brother was not a match, so Anasetti contacted Be The Match, the national registry. Patients and donors are matched through human leukocyte antigen (HLA) testing. The patient’s HLA is compared to that of potential donors to determine if there is a match. HLA are proteins on most cells in the body. The immune system uses HLA to recognize which cells belong in one’s body and which do not.
Fortunately for Steve, a 24-year-old man was a match, and he was willing and available to donate his stem cells. In the following years they have emailed, although they have not yet met in person.
Before the stem cell transplant, Steve would receive four rounds of Vidaza (azacitidine), a chemotherapy drug, followed by another bone marrow biopsy. Each round lasted seven days, with a 21-day break between rounds. He got through the chemotherapy with the help of another drug to deal with low white cell counts and blistering skin reactions.
October 13, Steve’s “Transplantiversary”
Finally, on Oct. 13, 2012, Steve had the stem cell transplant.
A few days before, Laura wrote in her blog: “Steve is amazing. His faith and optimism have never wavered through these past two years.”
“A week before the transplant and for three weeks afterward, I was in 3 West, and the staff was extremely supportive there. Very encouraging. Extraordinarily helpful. And every doctor I’ve dealt with during this period has been absolutely wonderful,” Steve said.
Moving forward with blood transfusions following the stem cell transplant presented more challenges for Benson’s blood bank team. Steve was born with type B+ blood, but the stem cell donor had type A+ blood.
Such a complete mismatch is one of the more challenging combinations any blood banker can face, according to Benson. Steve continued to make his own red cells for a period of time, as the donor transplant started to make new red cells and new antibodies. “So the two are BOTH making red cells and BOTH making antibodies. You need to provide blood that is compatible for BOTH the donor and the patient, so we need to give the very precious and in-demand universal group O blood,” Benson said.
Steve was also cytomegalovirus (CMV) negative, having never been exposed to the virus. Over half the adults in the U.S. have had this common virus in their body by the time they reach age 40. CMV can infect anyone and does not cause problems for most people, but for someone with a weakened immune system, it can cause serious disease. So Benson’s team also needed to make sure the blood for him was CMV-negative.
At this point, Benson already knew Steve’s blood needs very well. She oversaw his photopheresis treatments for a common side effect of transplantation called graft-versus-host disease (GVHD). Some GVHD is good, as it also can provide a graft-versus-tumor/ leukemia effect and suppress any residual disease like the MDS in Steve’s case. But the GVHD can be so severe that it causes considerable harm to the patient and often needs to be treated aggressively.
Extracorporeal photopheresis is one of the therapies used in the treatment of GVHD. It can take many months to years for the GVHD to be adequately treated. “I saw him over a number of years and also learned he is my neighbor; he lives two streets down from me,” Benson said.
Back to a New Normal
By December that year, Steve and Laura were grateful to be in their home, yet Steve’s immune system was like that of a newborn infant and he was extremely vulnerable. Fortunately, he was able to work from home. When he was able to return to his office at Shutts & Bowen, they had moved a printer, a refrigerator and a microwave into his office so he would not have to spend any time outside of his office. “And all the secretaries around my area had hand disinfectant dispensers on their desks,” Steve recalled.
Oct. 13, 2018, marked Steve’s six-year transplantiversary. In recent years he has participated in several 5Ks and intends to participate in many more. Steve and Laura have teamed up for Miles for Moffitt and Richard’s Father’s Day Family Walk/ Jog, hosted by Moffitt supporter and restaurateur Richard Gonzmart.
Faith was a major part of this journey, said Steve. “I never felt like I was alone or isolated during my time on 3 West or before when I had the chemo.”
Today, Steve continues his Moffitt visits. Since Anasetti’s retirement, Steve sees Joseph Pidala, MD, PhD, a medical oncologist in the same department. He still has to be careful, wearing gloves and a mask when doing the gardening work both he and Laura love – but the days of being hospitalized are far behind him. The future is bright. He continues his work at Shutts & Bowen and while still vigilant, the precautions have relaxed. He and Laura have expanded the work in their garden and are back to enjoying an active social life. And as they stroll under the canopy of their tree-lined South Tampa street, they can’t help but wonder about the coincidence of having their neighbor Dr. Kaaron Benson being part of their Moffitt treatment team and how she came to first know Steve’s blood and then to meet him for his GVHD treatment and successful graduation off the therapy.