Still Running

Winning a 10-year battle with blood cancer

By Mayo Clinic Staff

Rev. Arianne Lehn, a Presbyterian minister, stands next to her father's hospital bed, holding a bag filled with blood over her head. She recites the final words of her blessing: "We offer a special thanks to the donor who has so generously given of themselves so that another might have life. May they be blessed with all good things."

She continues, "And now, send your spirit upon these cells, blessing them with your love and healing power. In your Holy Name, we pray. Amen."

Letting his daughter's prayer wash over him, Tom Braithwaite settles into his hospital bed as a nurse connects the bag to an intravenous line leading to his chest.

Holding hands with his wife, Tacey, the two watch the red liquid drip, slowly traveling down Tom's IV and into his body. They silently thank the anonymous donor whose gift of life arrived at Mayo Clinic only minutes ago.

But Tom is under no illusions. He knows what he's up against, what the next few months will entail — exhaustion, emotional ups and downs, nausea, recurrent illness. He's been through this before.

But he also knows, as the donor's blood begins to course through his veins, that this stem cell transplant is his best shot at beating a deadly blood cancer.

An unfamiliar road

Ten years ago Dr. Tom Braithwaite found himself on the wrong end of a diagnosis — stage III, diffuse large B-cell non-Hodgkin lymphoma.

"I was stunned," he says. "I run. I take good care of myself. But there I was, with cancer."

Non-Hodgkin lymphoma occurs when the body produces too much of the white blood cell lymphocyte. Normally, old cells die and the body creates new ones to replace them. In non-Hodgkin lymphoma, the lymphocytes don't die. They continue to grow and divide.

After weeks of intensive chemotherapy treatments, Tom beat the disease and went into remission. He resumed his normal activities — treating patients, running in competitive races — and generally lived the life he had before the disease.

Then, in 2008, the cancer struck again. That's when he traveled to Mayo Clinic to meet with Thomas E. Witzig, M.D., a lymphoma specialist.

A long and winding journey

Dr. Witzig suggested that instead of blasting Tom's body with chemotherapy, they try radioimmunotherapy. The targeted therapy uses radioactive antibodies that attach themselves only to lymphoma cells, killing the cancer while decreasing side effects in healthy tissues.

"It can be more effective for some patients and less toxic than chemotherapy," says Dr. Witzig.

And so it seemed to be for Tom. Within a few months of treatment, he was back in remission. Within nine months, he and his daughter ran the Twin Cities Marathon and raised more than $10,000 for the Leukemia & Lymphoma Society.

But in spring of 2010, Tom relapsed again. His doctors recommended that they wage war on the disease with a stem cell transplant. The procedure uses very high doses of chemotherapy to destroy the cancer. But in doing so, it also kills stem cells in the bone marrow, which produce red and white blood cells as well as platelets.

A team of specialists first harvested healthy stem cells from Tom's blood. Then after heavy chemotherapy, doctors reinfused him with his own stem cells, which made their way into his marrow to produce new, healthy blood cells.

"It's like carpet bombing," Tom says.

And it felt like it. On top of struggling with side effects of intensive chemotherapy, Tom now had a compromised immune system and low blood counts. He caught a respiratory infection every few months, regularly battled 101-degree fevers, stayed in bed for days with uncontrollable shakes and chills, and suffered severe coughing attacks and extreme exhaustion.

"I began to wonder if I would ever feel good again," he says.

Another curve

Throughout his previous treatments, Tom reduced or temporarily suspended his hours as a doctor, then resumed seeing patients as soon as he recovered. However, after his stem cell transplant Tom's immune system was severely suppressed for many months, and for the first time in his working career he was unable to help patients at the bedside for fear of contracting an infection.

"This was a stunning moment in my life," says Tom. "I had to re-envision my future." When he was able to return to work, Tom switched careers while at Sanford Health in Sioux Falls, S.D., and became the chief quality officer.

Then in early 2012, a year and a half from his transplant, life threw another curve at Tom. While hiking in Washington with friends, he had trouble breathing and couldn't talk — a far cry from his lung capacity and fitness level during the half-marathon he ran seven months earlier.

All the chemotherapy that kept Tom alive the previous nine years permanently damaged his bone marrow stem cells. As a result, he developed therapy-related myelodysplastic syndrome (MDS) — an aggressive cancer of the blood and bone marrow that hinders the production of healthy blood cells. This second cancer was more lethal than his lymphoma, and doctors estimated his life expectancy was a year, at most.

Tom's wife, Tacey, recounts, "I wrote in my notes during an appointment in 2010 that Tom had a 5 percent chance of developing MDS. I didn't even know what that was. And the percentage was so low, we ignored it."

Dr. Witzig suggested a second stem cell transplant, this time from a donor, called an allogeneic stem cell transplant.

Tom's response: "Thanks, but no thanks."

"This had been nine years of my life. I didn't want to get beat up with another transplant, then die in an intensive care unit. I'd rather let the disease be the problem than die of the treatment."

Understanding Tom's concerns, Dr. Witzig shared a sentiment his father shared with him: To listen and consider. "All I'm asking," Dr. Witzig told him, "is that you meet with our MDS expert," Mrinal S. Patnaik, MBBS.

Tom took Dr. Witzig's advice. Therapy-related MDS is an aggressive disease with a high mortality rate. Without treatment, approximately 80 percent of people who contract the disease succumb to it within five years of diagnosis. With an allogeneic stem cell transplant, survivorship increases, and approximately 50 percent of patients are living disease-free at the five-year mark.

The advantage of an allogeneic stem cell transplant is that the donor stem cells make their own immune cells that recognize and destroy the cancer cells in the patient's body. The idea is that the donor stem cells will take over and start producing healthy blood cells, curing Tom of MDS.

The risks are that the donor cells could die or be destroyed by Tom's body before settling in his bone marrow (graft rejection). Or the immune cells from the donor could attack his body (graft-versus-host disease). And, because Tom's immunity would be so low for so long, he would be at high risk of developing infections that could cause permanent damage and even death.

"Dr. Patnaik and I had a very frank conversation," Tom says. "He didn't sugarcoat anything and was very factual about the risks of the procedure. But he wasn't without hope and shared his encyclopedic knowledge of the disease and survival rates."

"An allogeneic transplant is a rigorous mental, physical and spiritual test," Dr. Patnaik says. "But it is also a lifeline that has saved many people."

The gift of life

With the support of his family and friends, Tom took the leap of faith and underwent a second stem cell transplant in as many years. He worked with Be The Match, a national marrow donor program in Minneapolis.

In September 2012 the registry found Tom a donor. On Nov. 8 he began chemotherapy treatment to deplete his bone marrow of all existing cells. On Nov. 15 he received an intravenous allogeneic stem cell transplant, and for the next four months, Tom and Tacey lived in the Gift of Life Transplant House in Rochester, Minn.

During the first month, all Tom managed to do was get to his doctor appointments — then go back to bed. But the next month he began using the treadmill for easy walks. In February and March he started to jog. By April he could sustain a mile at a slow pace.

Then, on Sept. 8, 2013, Tom, who is now in full remission of MDS, ran a half-marathon with his brother, son and daughter-in-law to celebrate Tom's victory. Wearing a T-shirt emblazoned with "Be The Match," Tom crossed the finish line with many family and friends cheering him on.

May 09, 2014