Myelodysplastic Syndrome Survivor
- Diagnosed with myelodysplastic syndrome at age 45 in 2009
- Treated at SCCA with chemotherapy and an allogeneic bone marrow transplant
- After a recurrence, treated with another transplant
When Joe Grojean was 45 years old, his life “couldn’t have been more perfect,” he said. He had a wonderful wife and happy marriage, terrific kids, and a job he loved. He worked as a health-and-safety specialist—an early responder to industrial accidents—for a company that was contracted by the U.S. Environmental Protection Agency. “I was part of a team I believed in. I’ve worked in the environmental, safety, and health industry for nearly 20 years,” he said.
Joe’s work often put him in contact with hazardous situations and hazardous materials. His job was to make sure other workers were safe in dangerous environments. As a result, he ended up in harm’s way, which is why his company performed mandatory annual physical exams of their employees.
In 2008, during Joe’s most “perfect” year, his annual exam revealed that his red blood cell count was low. Nothing to worry about, he was told—he had probably just gotten over a cold. But in 2009, when his count was even lower, by several percentage points, he was told to follow up. So Joe decided to see a blood specialist, or hematologist, at Valley Medical Center.
“That was in October,” Joe said. “My wife, Carol, said I was more tired at the time. But I don’t remember that I felt any differently. The next month, I had a bone marrow draw.”
Diagnosis: Myelodysplastic syndrome
The results showed there was trouble with Joe’s bone marrow. The hematologist diagnosed myelodysplastic syndrome (MDS), a group of diseases that affect the blood-forming stem cells in the bone marrow. MDS can lead to low levels of red or white blood cells or platelets in the circulating blood—and in some cases to high levels of very immature abnormal blood cells that build up in the bone marrow and then are released into the bloodstream.
“[The hematologist] told me that it wasn’t too bad,” Joe recalled. But the doctor also recommended that Joe see Bart Lee Scott, MD, a medical oncologist at Seattle Cancer Care Alliance (SCCA) who specializes in treating MDS and similar diseases. Joe saw Dr. Scott on December 18, 2009.
Meeting an MDS specialist
“We were giddy,” Joe said about his first appointment with Dr. Scott. Ready to hear what a big deal this disease wasn’t going to be, “Carol and I sat down at a table. There was a tape recorder and a white board. Dr. Scott walked into the room and laid it out for us. My disease was more severe than I’d thought.”
Joe learned that he had level-two MDS, on the verge of level three, and that it was quite aggressive. If the level went any higher, he would have full-blown leukemia. The prognosis was bleak if Joe didn’t get any treatment, potentially only six to 18 months’ survival. But Joe had some choices. “Dr. Scott gave me three or four options to treat or manage the MDS but [said] a bone marrow transplant would cure me,” he said. So Joe made a decision. “After the New Year, I would be admitted for inpatient chemotherapy at the University of Washington Medical Center (UWMC). I would need to quit my job during treatment.”
“Dr. Scott told me to enjoy life for the next two weeks before starting treatment,” Joe said. “So I threw a party and invited everyone I knew. I treated my MDS like a common cold. Everyone knows someone who’s had cancer. They live through it. I thought I would be fine in six to 12 months.”
Treatment for MDS
On January 4, 2010, Joe got a Hickman line, a central venous catheter through which his medication would be administered. He was admitted to UWMC on January 5 and was hooked up to chemotherapy right away.
“The chemo was bright red,” Joe recalled, “—something [that] in nature, school, and chemistry meant danger, toxic.” He remained at UWMC as an inpatient for the next month and was given a lot of chemotherapy to combat his disease. “The nurses were impressed with how well I handled the chemo,” Joe said. “I didn’t get sick!”
Joe went home after that month of treatment with a severely compromised immune system, and Carol immediately removed all the houseplants and their cat from their home for fear that they might carry germs that could make Joe sick.
“We had an old dog and a new puppy at the time,” Joe said. But the puppy soon had to find a new home after a playful scratch sent Joe to the hospital with a blood infection, followed by pneumonia, and then a fungal infection. After that, Joe was quarantined to his hospital room for over two months.
Lying around was not something Joe was used to. He didn’t like feeling bad and having people help him all the time. “Something in me just clicked one day,” he said. “I felt like I needed to do more to help myself, and I started to eat more and drink more, and slowly I started to get better.”
Bone marrow transplant #1
Dr. Scott and Joe decided that a bone marrow transplant would be the next step in Joe’s treatment. So Joe received more chemotherapy, called induction chemotherapy, to destroy his malfunctioning bone marrow and then an infusion of donated cells to replace it. “We decided to hit this thing hard and kill it,” Joe said.
It took a long time to find a bone marrow donor who matched Joe’s blood type. There were two potential donors in the United States and one in Europe. But none was a perfect match. Then Joe’s team considered using stem cells from cord blood, but the results were not likely to be as favorable in Joe’s situation. Eventually they found a donor, and on May 18 and Joe had a transplant. He spent the next 30 days at UWMC while his new immune system got up to speed. Once Joe returned home, his recovery was slow.
“Carol was amazing after my transplant,” Joe said. “She hired some people to help me at home so she could continue to work. I enjoyed being at home in the morning with my two kids before they went to school each day. But I was pretty useless until my blood came back to near normal levels. The doctor emphasized [that it was important I have] no accidents, but it was inevitable I would stumble or pass out from my low blood counts.”
Joe worked hard to get healthy again. Six months after transplant, he was walking five miles a day and seeing Dr. Scott twice a week. Joe’s new immune system was getting stronger, but his counts didn’t improve as quickly as Dr. Scott wanted. At nine months post-transplant, Joe still wasn’t feeling like he should, despite the fistfuls of medications, supplements, and vitamins he was taking. “I was still exhausted,” Joe recalled.
Joe asked if Dr. Scott would do his annual bone marrow draw early at nine months, which he did at Joe’s next appointment. When the results came in, Dr. Scott called Joe right away to tell him that the MDS was back.
Options for recurrence — bone marrow transplant #2
Joe had few options to treat his recurrence. He could have chemotherapy again but not as aggressively as before. His chance of dying from the toxic effects of treatment was higher this time. So Dr. Scott decided to combine less aggressive chemotherapy with radiation therapy before doing a second transplant.
A donor perfectly matched to Joe was found, and Joe received six rounds of chemotherapy as an outpatient followed by a large dose of full-body radiation. Then he had his second transplant on July 29, 2011. This time, Joe stayed in the hospital for just a week. “There was a huge concentration of stem cells to where I had a reaction after I received them,” Joe said. “I could tell the difference right away between the two transplants within the next few months.”
Despite having a perfect match for his transplant, Joe developed graft-versus-host disease, a common reaction in which the donor’s transplanted cells recognize the recipient’s tissues as foreign and attack them. Immunosuppressive drugs help patients handle the effects, which can include skin problems, mouth and gut problems, and dry or watery eyes.
But the medications have side effects, too. “I started having bad joint issues about six months or so after my transplant,” Joe said. “I could hardly get out of the car or off the sofa.” A pain specialist at SCCA determined this problem was likely due to the prednisone and another immunosuppressive medication Joe was taking. They tapered off the prednisone as best they could and changed his other medication, which did ease Joe’s joint pain. “I was then able to start lifting weights and walking again,” Joe said.
“Almost one year to the day [after my transplant] I got an email from the program where my donor had come from saying that the donor wanted to meet me,” Joe said. Through the Gift of Life organization, Joe and his family were flown to the East Coast, where they participated in a transplant event in New Jersey. While on stage, Joe was introduced to the man who had donated his life-saving stem cells.
“His name is Ari, and he’s such a special kid,” Joe said, speaking of the donor who was in his mid-twenties. “I no longer have any of my original blood in my body. It’s 100 percent the donor’s blood.” The two keep in touch frequently now.
Life after MDS
For Joe, life after MDS means getting used to a new normal. With his pain nearly gone and his medications slowly being discontinued, Joe’s visits to Dr. Scott have also decreased. Joe works out a lot — biking, walking, and lifting weights — and in 2013 he started a new part-time job at the University of Washington, again working to keep others safe in their work environments.
“It’s nice to have life back,” Joe said. “[This disease] will always be a part of my life now, but I’m biking to work, and I feel like the luckiest guy in the world. By 2014, I’ll be off of all my medications. Dr. Scott says I can get back to life, take vacations, be with family and friends, but don’t pick up any bad habits.”
A big part of Joe’s new life is giving back any way he can. He volunteers often and supports SCCA, Fred Hutchinson Cancer Research Center, UW Medicine, and Gift of Life. “Can I get back to that perfect life I had before? We’re all different now. I’m trying to pursue the ‘new’ perfection,” he said.