Stem Cell Transplants For Myelodysplastic Syndromes – Part 5: Patient Experiences (Unrelated Donors)
Published: Sep 7, 2010 1:31 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 donor stem cell transplantation share their experiences with the procedure and how it impacted their life after the transplant.
This article covers MDS patients who found their donor through a bone marrow donor registry.
Barbara Davis was diagnosed with MDS in November 2006 at the age of 43. She was an avid runner at the time and quickly noticed her body feeling weaker and “not right.” Davis was diagnosed with MDS four weeks later.
In preparation for the donor stem cell transplant, Davis had her human leukocyte antigen (HLA) type (a cellular marker that plays an important role for the success of a transplant) determined right away. By January 2007, three potential donors were found through the national “Be The Match” Marrow Registry. Her eventual donor was a ten for ten HLA match. (The higher the HLA match, the lower the risk for complications after the transplant.)
“It was very hard to wait for the final date because many things can go wrong. Patience was key,” said Davis. She continued to exercise, teach her eighth grade class, and raise her three children to keep her mind focused on surviving.
Davis received her transplant at the Moffitt Cancer Center in Tampa, Florida, in April 2007. She stayed in the hospital for one month after the procedure. Despite “feeling very strong going into the transplant,” losing her hair and the prednisone side effects “were sometimes almost too much to bear.” (Prednisone is frequently prescribed after stem cell transplants to treat complications.)
Davis also had very high blood pressure and a severe magnesium deficiency due to Prograf (tacrolimus) treatment to prevent graft-versus-host disease. “I was taking 30 magnesium pills a day and was receiving four hour infusions of magnesium as well,” recalled Davis.
In addition, Davis experienced bone weakness, migraines, flu-like aches and pains, numbness in the hands and feet due to nerve damage, cataracts, and dry eye. Her bone weakness led to a fractured left hip that was repaired with two four-inch screws. The numbness was especially hard for Davis because she is a very active person.
After Davis was released from the hospital, she saw her doctor monthly for lab work and bone marrow biopsies. She also began regularly seeing a psychologist to “help with the issues of being a survivor: friends who do not know what to say or who feel uncomfortable, changes in personal appearance, and how long it takes to feel like yourself again.”
Although she was weak for the first year after her transplant, Davis went back to teaching after four months. Teaching helped her realize she had to keep going. “No sitting at home feeling sorry for myself,” said Davis.
She started feeling stronger six months after her transplant. At one year post-transplant, Davis was able to start running and strength training again. She was able to run the 2008 Orlando Utilities Commission Half Marathon.
“I see life at a much deeper level now. I have moments of clarity where everything is a miracle,” Davis reflected.
Davis is now teaching ninth grade English. She keeps a Livestrong poster in her classroom and tells her students about her transplant. She also shares her motto with them, “Per aspera, ad astra! Through difficulties to the stars!”
Davis is also a First Connections volunteer with the Leukemia and Lymphoma Society and speaks with pre-transplant patients at the Moffitt Cancer Center.
She welcomes questions about her experience at .
Nita Plauche was diagnosed with MDS in 1998 at the age of 39. Although she was monitored by her doctor, she received no treatment for her MDS until her bone marrow transplant in February 2000 when she was 41 years old.
Finding a donor was difficult for Plauche. None of her six siblings or her cousins were a match. A match was found through the National “Be The Match” Marrow Registry, but the person was ultimately unable to be a donor.
During this time, Plauche’s MDS worsened. In December 1999, her doctors decided to use bone marrow from a mismatched unrelated donor.
Plauche’s transplant was performed at the Fred Hutchinson Cancer Research Center in Seattle. She and her husband traveled to Seattle about three weeks before her transplant date. It was difficult for her to leave her children but she received support and help from her in-laws who stayed with the girls.
The time before Plauche’s transplant was spent going to doctors visits, undergoing medical testing, and receiving chemotherapy to destroy her unhealthy bone marrow.
Plauche received her bone marrow transplant at the end of February 2000. Afterward, Plauche stayed in the hospital for three weeks. Her husband and sister took turns being her caregiver. “I could not have done the transplant without their care and help,” said Plauche.
When she was released, she and her husband stayed at The Pete Gross House, housing provided to patients by the Fred Hutchinson Cancer Center, until mid-June. Plauche typically spent her days visiting the doctor for lab work, taking her medications, and walking to build up strength.
During her recovery, Plauche was allowed to go out to shop, tour Seattle, and eat out as long as she felt well enough. “Some days I had a lot of energy and others, I just wanted to sit and watch TV,” Plauche recalled.
Plauche was hospitalized again for a lung infection right before she was scheduled to go home. A lung biopsy had to be performed. Plauche had a reaction to the pain medication she was given for the biopsy.
Once the infection was controlled, Plauche was able to go back to her Seattle apartment to fully recover before returning home.
“I was very anxious when I first got home,” confessed Plauche. She was still fatigued and taking many medications and now had to adjust to taking care of her house and her daughters again.
Plauche continued to see her local doctor regularly until her one year follow-up back in Seattle. By then she had started to feel normal again. At 18 months after the transplant, Plauche started a part-time job at a local library. She worked at the library for about three years before becoming a substitute teacher. She now works almost every day during the school year.
In the past ten years, Plauche has been able to travel, hike in several national parks, and see her daughters grow up. “I am grateful to the doctors and staff at the Fred Hutchinson Center and my donor for giving me a new life,” she said.
Plauche can be contacted at for any questions regarding her experiences.
Andy Carrico was diagnosed with MDS in August 2006 at the age of 63. Soon after, he began treatment with Procrit (epoetin alfa) and Vidaza (azacitidine). Neither of the treatments was effective, and Carrico’s blood cell counts continued to decline.
By June 2007 Carrico and his doctors had decided to move forward with a stem cell transplant. When Carrico’s brother and sister both were not donor matches, he turned to his health insurance provider to find an unrelated donor.
A donor who matched Carrico’s HLA in ten of ten positions was found. However, the donor would not be available until March 2008, and Carrico could not wait that long. Instead, Carrico received the stem cells from a donor who was a nine out of ten match in August 2007.
For the first 16 months after being released from the hospital, Carrico’s condition steadily improved. During the first three months home, he gained back some of the 20 pounds he had lost during chemotherapy, and his strength and energy increased.
“By five months after my transplant, I was feeling pretty much back to normal,” Carrico recalled.
Carrico also developed mild graft-versus-host disease. After he began prednisone treatment to dampen his immune system, there were no significant complications.
At 16 months after his transplant, Carrico’s graft-versus-host disease flared up. This time, prednisone treatment caused diabetes and osteoporosis. Carrico is currently on medication to treat his osteoporosis, but his diabetes medications had no effect initially.
“My blood sugar levels remained high, and I was losing weight and energy,” Carrico described.
Over the next two months, Carrico lost 30 pounds and was hospitalized for four days for acute weight loss, dehydration, and kidney failure due to his high blood sugar levels. Carrico began taking insulin and slowly regained his strength and put on weight. About two months after starting insulin treatment, Carrico’s condition stabilized.
To avoid more graft-versus-host disease flare ups, Carrico must avoid direct sun exposure. Being a Southern Californian, this limits many of Carrico’s outdoor activities such as visiting parks, taking long walks, and frequenting the beach.
Carrico often takes a nap in the afternoon. He has trouble maintaining his focus and still does not have the same energy and stamina levels he did before his transplant.
Carrico continues to take drugs to suppress his immune system and remains careful of his surroundings and being near people who may be sick.
Carrico and his stem cell donor have been in contact since 2007. His donor is a woman from Germany.
In the United States, donors and recipients have to wait one year before they can contact one another. The German marrow donor registry has a two-year waiting period for its donors and recipients.
Carrico and his donor were allowed to contact each other before the end of the two-year waiting period by sending letters through the American and German donor centers.
In July 2009, Carrico and his donor began direct contact. “We learned a lot about each other and our families and histories, including exchanging photos,” Carrico explained.
Carrico’s donor and one of her sons came to visit Carrico and his family in August 2010. “Seeing her at the airport was a very emotional experience for both my wife and me. My children were able to meet and thank her,” recalled Carrico.
Carrico and his donor are planning additional meetings in the future.
Carrico said, “I am willing to share my story with anyone considering a transplant. After all, it is a good story.” He can be reached at .
In 2004, Ryan Collins was diagnosed with aplastic anemia, a blood disorder in which the bone marrow does not produce enough blood cells. By 2005, while Ryan was 30 years old, his condition progressed to MDS.
His aplastic anemia was initially treated with Thymoglobulin (rabbit anti-thymocyte globulin) and Atgam (equine anti-thymocyte globulin). Collins showed a partial response, but his blood counts remained below normal levels.
When Collins’ doctor performed a biopsy ten months after his aplastic anemia diagnosis, he discovered chromosomal abnormalities and diagnosed Collins with MDS.
Collins’ blood counts steadily decreased, and he required regular blood transfusions until his transplant.
When Collins’ sister was not a donor match, his hospital, Royal Prince Alfred Hospital in Sydney, Australia, searched the Australian Bone Marrow Donor Registry and then international registries.
A Taiwanese donor who was a ten for ten match (the higher the match, the lower the risk for complications after the transplant) was eventually found, and Collins received his transplant in September 2005.
Collins was hospitalized for 37 days after his transplant. “It seemed to take forever due to being trapped in isolation for about half that time,” he recalled.
After being released from the hospital, Collins stayed in an apartment near the hospital that was provided by the Australian Leukaemia Foundation. He was there for a couple of weeks and returned to the hospital for regular blood tests about every other day.
Collins recalled, “Each day, it felt like I had not gotten enough sleep. I felt groggy, fatigued, and generally not enthusiastic about much.”
He was readmitted to the hospital after experiencing stomach problems. No infection was found.
Collins then moved from the apartment to his parents’ home for about a year. He was too fatigued to work during that time.
“I read and surfed the Internet a lot. I meditated each day, which helped lift my spirits and remain calm during all the chemical turmoil my body was enduring,” said Collins.
After about six months, Collins began doing very mild exercise.
Collins suffered from mouth ulcers for about six months after the transplant. “It restricted my diet and was quite painful,” he described. He also experienced some of the common prednisone and cyclosporine side effects, including rounding of his facial features, sun sensitivity, insomnia, and trembling hands.
“It took almost two years before I felt ‘back to normal,’” Collins explained. By then he was no longer taking medication but still needed to limit his activity for another year or two.
Collins developed a mild case of pneumonia about two years after the transplant. About six months after that, he came down with a severe case of shingles.
Collins already led a healthy lifestyle before the transplant, but he tries to improve it even further.
“I live an even healthier lifestyle than before, eating lots of fruits and vegetables and less meat, drinking plenty of water, always being active, and also trying to remember my lesson of just how valuable family, friends, and life are,” said Collins.
He remains susceptible to colds and bronchial infections and takes longer to recover after exercising than before the transplant. He undergoes blood testing every six months.
Collins is currently working on conservation in Fiji, where he enjoys scuba diving adventures, soccer, and traditional Fijian living. He plans to return home to Australia next year.
He reflected, “The path can be long and bumpy but sometimes you get to the top of that mountain and can enjoy the view.”
Ryan would like to thank his hematologist, Professor John Gibson, and the whole team at RPA Hospital for their brilliant work. He is also grateful for the love and support of his family and friends.
Collins welcomes patients to contact him at .
If you are considering a stem cell transplant or are in the process of a transplant and would like to speak with someone who has already gone through the treatment, please contact Sue Stewart at the Blood & Marrow Transplant Information Network. She works with a wide range of stem cell transplant survivors to match them with potential transplant recipients based on age, background, religion, and other criteria.
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 4: Patient Experiences (Sibling Donors)
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 1: Introduction & Types Of Transplants
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 2: Procedure
- Stem Cell Transplants For Myelodysplastic Syndromes – Part 3: Benefits & Risks
- The Public Is Encouraged To Comment On Potential Medicare Coverage Of Bone Marrow Transplants For Myelodysplastic Syndromes Patients