Stem Cell Transplants For Myelodysplastic Syndromes – Part 4: Patient Experiences (Sibling Donors)
Published: Aug 30, 2010 4:00 pm
This article is part of a series about stem cell transplantation in MDS, which will be published over the next couple of weeks. The series will explain the different types of stem cell transplants, describe the procedure for both patient and donor, address benefits and risks, and report on experiences of MDS patients who underwent the procedure.
In this final part of the series, MDS patients who underwent a donor stem cell transplantation share their experiences with the procedure and how it impacted their life after the transplant.
This article covers MDS patients whose donor was a sibling. A second article will cover patients who found their donor through the National Marrow Donor Program.
Roger Contreras was diagnosed with MDS in July 2008 at the age of 40. He received an allogeneic bone marrow transplant in March 2009. His sister was the donor.
After being released from the hospital, Contreras had monthly check ups to monitor his blood levels. As more time elapsed and his blood counts improved, his doctor steadily decreased the number and dosage of prescription drugs Contreras needed to take to prevent complications.
Contreras described his on-going recovery as “a roller coaster. I have good days and bad; I am strong and then weak.”
On a typical day during his early recovery, Contreras woke up at about noon. Most days it was difficult to eat. He was lethargic for much of the day. Patients are often too weak to do more than sit up and take a few steps during the first few weeks back from the hospital.
During this stage of recovery, Contreras developed a severe infection and was hospitalized for three weeks. The steroid treatment he was prescribed during the hospital stay caused diabetes.
“It is almost 16 months since my transplant, and I still am not back to normal,” said Contreras. He continues to take eight prescription drugs and has been unable to return to his construction job.
Steve Flaig was diagnosed with mantle cell lymphoma in July 2005 at the age of 45. Mantle cell lymphoma is a very rare form of non-Hodgkin’s lymphoma. After undergoing chemotherapy treatment for his mantle cell lymphoma, Flaig’s bone marrow was so damaged that he developed MDS in September 2007.
Due to the nature of the origin of his MDS, Flaig did not receive any treatment for MDS but proceeded to the stem cell transplant right away.
Flaig’s sister was his stem cell donor. She experienced some mild discomfort from the Neupogen (filgrastim) injections used to stimulate her white blood cell production. However, according to Flaig, “Her overall experience was not overly unpleasant.”
Flaig’s transplant was performed in Houston in January 2008. He moved back to Dallas after the procedure, and he still sees his doctor every two months for follow-up care.
During the five months after his procedure, Flaig suffered from acute graft-versus-host disease in his stomach that often made him nauseous. He also developed chronic graft-versus-host disease which has affected his lungs and caused him to lose his hair. Flaig was also stricken with pneumonia twice during recovery.
Despite his rough recovery, Flaig never stopped working as a marketing director. He said, “I had something to focus on – that helped during the recovery process.”
It took Flaig six months before he started to feel better and about a year and a half before he reached what he calls “new normal.” He is able to exercise like he did before the transplant but has had to cut back on his daily runs. Flaig also gets tired in the afternoon and needs to rest for about 30 minutes before continuing his day.
Flaig can be reached at to answer any questions about his experience with MDS and stem cell transplantation.
Robert Poole Jr.
Robert Poole Jr. was diagnosed with MDS with genetic abnormalities in chromosomes 1 and 7 in August 2004 after feeling sick on and off for several months. He was 22 years old.
He first detected a problem while at the dentist’s office for a routine cleaning. The procedure had to be stopped because his blood would not clot. After a few weeks, Poole became so sluggish that he struggled to make it through his day.
When he started having strep throat-like symptoms, he saw a doctor. When the doctor took blood samples and gave Poole a shot of antibiotics for this symptoms, Poole became pale and eventually passed out. The doctor suspected a problem with Poole’s blood and referred him to a blood specialist at Shelby Baptist Medical Center in Alabaster, Alabama, who made the MDS diagnosis.
His condition was so severe that his blood specialist had him rushed to the hospital as soon as she made the diagnosis. Poole required blood and platelet transfusions almost every other day.
His doctors recommended a stem cell transplant as soon as possible, but the University of Alabama at Birmingham Hospital’s Bone Marrow Transplant Unit did not have an opening at that time. Poole was sent home to wait for an opening. In the meantime, he was under strict instructions to avoid crowds, to use a mask to prevent contact with germs, and to not handle sharp objects or shave to avoid cuts and excessive bleeding.
About a month later, Poole was admitted to the University of Alabama at Birmingham Hospital to undergo the stem cell transplant. Poole’s only sibling turned out to be a 100 percent match and agreed to be his donor. Doctors began preparations for the two of them to undergo the procedure.
Chemotherapy with busulfan (Busulfex) and fludarabine (Fludara) was used to prepare Poole’s bone marrow and blood for the transplant. In addition, he received Atgam (lymphocyte immune globulin) to suppress his white blood cells and acyclovir (Zovirax) to prevent viral infection.
Poole’s sister received medication in the days prior to the transplant to stimulate her stem cell production. Her cells were harvested the day before Poole’s transplant.
Poole experienced many of the common transplant side effects such as a sore mouth, loss of appetite, nausea, sluggishness, and graft-versus-host disease. After his transplant, Poole also suffered from back pain that eventually faded.
A typical day recovering in the hospital involved waking up nauseous and waiting for blood count results to determine his progress. It was difficult for Poole to take his medication or eat because his mouth was sore. He was often too fatigued to pass time by watching TV, playing games, or reading blogs.
“The hardest part is waiting this period out and trying to stay positive when you are so sick some days that you can’t hold your head up,” recalled Poole.
Poole was able to return to his nearby home 28 days after the transplant. He continued to have his blood levels monitored daily at the outpatient clinic. During one of his initial follow up visits, a virus was detected in Poole’s blood. He was admitted back into the hospital for six days to treat the infection.
Based on his progress, Poole’s appointments decreased in frequency. He now comes in for a follow up exam every five years.
During his at-home recovery, he was given many guidelines to follow including avoiding crowds of people and adhering to a list of prohibited foods and drinks.
“Recovery is a long, slow process that seems to take forever and a day,” described Poole’s mother Regina Vick. It took Poole about a year and a half before he felt back to normal.
September 2010 will mark Poole’s sixth year post-transplant. Poole said, “I live a normal life. You would not know I had ever been sick a day in my life. I have a lot to be thankful for.”
One thing Poole and his mother are thankful for is Poole’s infant son. Doctors had warned that the chemotherapy treatments needed to prepare Poole’s body for the stem cell transplant may leave him sterile. Despite chemotherapy, Poole welcomed the birth of his son Tripp in November 2009.
Vick can be reached for any questions regarding Poole’s experience with MDS at .
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 5: Patient Experiences (Unrelated Donors)
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 2: Procedure
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 1: Introduction & Types Of Transplants
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 3: Benefits & Risks
- Personal Perspective: “I Have MDS.”